The Canadian Neonatal Network™ Le Réseau Néonatal Canadien™

Abstractor’s Manual

July 21st, 2004

TABLE OF CONTENTS INTRODUCTION

CHAPTER ONE: INTRODUCTION TO THE CNN……………..…………………………….. 2 CHAPTER TWO: BACKGROUND………………………………………………………….. 3 CHAPTER THREE: DATA COLLECTION …………………………………………………. 4 CHAPTER FOUR: ERROR CHECKING …………………………………………………… 6 CHAPTER FIVE: CONFIDENTIALITY & PROFESSIONALISM ……………..….…………….. 7

SCREEN DEFINITIONS

GENERAL DATABASE USE…………………………………………………………...….. 8 PATIENT LOG/ADMISSION…………………………………………………………...….. 9 MOTHER/OBSTETRIC………………………………………………………………..…... 12 SNAP SCREEN…………………………………………………………………....…….. 15 NTISS……………………………………………………………………………………18 TRANSPORT SHEET…………...…………………………………………………....……. 24 TRIPS SCREEN…………………………………………………….………………….… 25 DIAGNOSIS/PROCEDURES…………………………………...……………………....…… 26 IVH/ROP………………………...……………………………….…………………….. 30 CULTURES/CVL/TRANS………………………………………………...………....……. 33 MEDICATIONS…………………………………………………...….…………………... 35 DAY 28………………………………………………………………...………....…….. 37 WEEK 36……………………………………………………………….………....…….. 38 DISCHARGE………………………………………………...………....…………….…… 39 POST-TRANSFER………………………………………………….….………………..… 41

APPENDICES

APPENDIX I: NTISS DRUG CLASSIFICATION LIST………………………………………… 42 APPENDIX II: CLASSIFICATION OF MAJOR/MINOR OPERATIONS………………………... . 50 APPENDIX III: OTHER DIAGNOSIS LIST…………..……………………………..…..…… 52 APPENDIX IV: CONGENITAL ANOMALIES LIST…………………………………..…..….. 56 APPENDIX V: DEFINITIONS OF DIAGNOSIS OF INFECTION…………………….…..…..…. 71 APPENDIX VI: ERROR CHECKING RULES FOR INFECTION EPISODES……………………... 74 APPENDIX VII: POSITIVE CULTURES-ORGANISM LIST…….……………….…..…….….. 77 APPENDIX VIII: DEFINITION OF APPROPRIATE FIO2 ……………………………..…..…. 79 APPENDIX IX: DEFINITIONS OF MEDICAL TERMS …..………………………..………..… 80 APPENDIX X: CANADIAN NEONATAL NETWORK SITES…………………….…..….….…. 87 APPENDIX XI: DATABASE SCREEN VIEW…………….…………………………..………. 88

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CHAPTER ONE: INTRODUCTION TO THE CNN What is the Canadian Neonatal Network?

The Canadian Neonatal Network (CNN) is a group of multi-disciplinary Canadian researchers who collaborate on research issues relating to neonatal care. The Network was founded in 1995 by Shoo Lee, MBBS, FRCPC, PhD and now includes members from 29 hospitals and 17 universities across Canada. The Network maintains a standardized neonatal intensive care unit (NICU) database and provides a unique opportunity for researchers to participate in collaborative projects on a national and international scale. Health care professionals, health services researchers and health administrators participate actively in clinical and epidemiological outcomes, health services, health policy and informatics research aimed at improving the efficacy and efficiency of neonatal care. Research results are published in Network reports and in peer-reviewed journals.

Mission Statement of the CNN ”To be a network of Canadian researchers who conduct leading multi-disciplinary, collaborative research dedicated to the improvement of neonatal-prenatal health and health care in Canada and internationally”. Specific Goals

1) Establish a national network of multi-disciplinary Canadian researchers interested in neonatal-perinatal research

2) Establish and maintain a truly national neonatal-perinatal database and provide the infrastructure to facilitate collaborative research

3) Longitudinally study outcomes and variation in medical care that increases costs but does not improve outcomes. This is important because NICU care is one of the largest components of child health expenditures and exhibits large variations in mortality, morbidity and costs.

4) Develop innovative research methods that can lead to improvement in health and quality of healthcare.

Database 1) Core Database: The Network will maintain a core Network database. Institutional representatives and the Steering Committee decide policy concerning content and use of the database. 2) Project Database: Research projects may request utilization of the Network data acquisition system to collect project related data. Such requests will be approved by the Steering Committee. Access to such data will be limited to members of the research project. Expenses relating to such data acquisition will be the responsibility of the project researchers concerned.

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CHAPTER TWO: BACKGROUND

Neonatal Intensive Care Newborn intensive care is a rapidly evolving area of medicine in which advancing technology and new treatment techniques have proven very effective in improving infant outcomes. There is constant innovation and introduction of new treatments, equipment and procedures. Despite this rapid progress, there remains a significant mortality and complication rate, particularly for extremely premature infants. It has become evident that there are marked differences in outcome between different Neonatal Intensive Care Units (NICUs). Furthermore, neonatal care is extremely costly, amounting to thousands of dollars spent for each day in the NICU. Due to wide variations in care outcomes, and to the extremely high cost of care it is crucial that both established and novel medical treatments for newborn infants be analyzed for effectiveness and cost-efficiency. Evaluating Practices The effectiveness of many individual treatments (respirators, drugs, formulas, etc.) has been proven in clinical trials. However, when used in combinations, on different populations, or by less skilled clinicians, the effectiveness of these treatments in actual practice may vary. These variations in effectiveness or quality of care may be responsible for the observed variations in outcomes. If true, this presents an important opportunity to improve care, by identifying ineffective care practices. One method for identifying the most effective practices is to compare the outcomes of patients who undergo different treatment strategies. This approach depends on comparing equivalent patients. For example, if two NICUs use different treatment strategies on babies with the same medical condition, but some babies started out sicker that others, there is no way to accurately assess whether the treatments were used effectively, and which of the treatments was most effective. To permit fair comparisons, it is essential to have an objective way to measure severity of illness. The SNAP Score SNAP (Score for Neonatal Acute Physiology) is an illness severity scoring system which sums up the worst physiological derangement in each organ system in the first 12 hours of admission to the NICU. This scoring system has been shown to be highly predictive of neonatal mortality and to be correlated with other indicators of illness severity including therapeutic intensity, physician estimates of mortality risk, length of stay, and nursing workload. SNAP provides a numeric score that reflects how sick each infant is. This scoring system is modeled after similar adult and pediatric scores, which are already widely in use. The TRIPS Score The Transport Risk Index of Physiological Stability (TRIPS) is an index which is used to assess changes in patient condition as a result of the transport process. TRIPS looks at four empirically weighed items: temperature, blood pressure, respiratory status and response to noxious stimuli. These items are compared just prior to transport, upon admission to the receiving NICU, twelve hours following admission and 24 hours following admission. TRIPS has been found to be a good predictor of NICU mortality and severe IVH risk. TRIPS is also important in that it can be used to help explain causes for a patient’s change in status during transportation and from this new procedures to improve patient care during transport can be identified.

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CHAPTER THREE: DATA COLLECTION Data Collection All data collection will be conducted by medical chart review. Data collection should occur at the bedside both to maximize the amount of information obtainable (that is, having the ability to clarify confusing or incomplete chart entries by asking attending clinicians), and to save the time involved in tracking down medical records once the patient has left the hospital. In addition, the data collected will be entered directly into laptop computers. Direct data collection combines the steps of data collection and data entry into one task, saving time and reducing the risk of human error in obtaining the data. Software requirements for the lap-top include: Access 2000 and .NET Framework and MDAC 2.6 or higher, which can be downloaded from the internet for free. Which Babies to Abstract Abstractors are responsible for abstracting every eligible admission to the NICU. Eligible babies are babies who stay in the NICU for at least 24 hours OR who die/are transferred to another level 2 or 3 facility within 24 hours. (Note: For purposes of this study, time of admission is defined as the time of the first set of recorded vital signs.) Once a baby has been admitted to your NICU, you will have ultimate responsibility for the data collection on that baby, regardless of outcomes or transfers. Note that some hospitals consider their resuscitation room an extension of the NICU. If this is the case at your hospital then you can include data occurring in the resus room provided that (a) the infant is considered to be ADMITTED TO THE NICU AND (b) NICU NURSES ARE PRESENT AND RECORDING VITAL SIGNS. If the infant is NOT considered admitted to the NICU, then therapies administered in the resuscitation should NOT be included in data collection, with the exception of surfactant administration. Admission Tracking Abstractors should check NICU admission log books daily for new admissions. It is crucial that every eligible baby be abstracted (see “which babies to abstract” above). In order to not miss eligible babies it is best to stay current in your abstraction. It is important to stay on top of your abstracting because: 1) If something is unclear or confusing, you can ask the NICU staff questions and they are likely to know the information. If you wait too long after the baby’s discharge, they may not have accurate recall of the needed information. 2) Tracking down medical records once the baby leaves the unit can be time consuming and difficult. It also runs the risk that records may be lost. You may try to arrange with your Institutional Representative to have your NICU staff hold charts of discharged babies for an extra day thus giving you the opportunity to obtain the discharge data before chart removal. If this is arranged, you should check for charts of discharged babies first thing each day to minimize the delay in chart removal. Data Content Data collection consists of four major categories of information.

1) Registration Information: Background information such as birth weight, gender, gestational age and obstetric variable will be recorded on admission to the NICU.

2) Illness Severity: Illness severity will be recorded using SNAP, a physiology based measure. 3) Transport Information: Transport details and physiological details as a result of transport situations

will be recorded after 12 hours of admission. 4) Discharge Abstract: At discharge, abstractors will record a number of outcome variables including

diagnoses, complications, survival, discharge date and disposition. Scoring Periods

SNAP: SNAP is scored on the day of admission for the first 12 hours following admission. Where the time of admission is defined as the time the first vital signs are recorded in the NICU. Day 28: Day 28 data should be recorded as the first data noted after midnight on day 28 of life to 23:59 (24 hours). Week 36: Week 36 is 36 weeks post conception (gestational age plus weeks of life.) It is computed using the obstetric gestational age unless the pediatric gestational age differs by 3 weeks or more. In the latter case, calculate week 36 from the pediatric gestational age. Please note that if the baby is born at 32 weeks gestational age, the week 36 data will be identical to the day 28 data. Therefore, this data should not be collected if the gestational age is 32 weeks or more, or if the patient dies or is transferred to a level 1 nursery prior to week 36. Data should be recorded by using the first value noted after midnight on the first day of week 36 to 23:59 (24 hours).

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Missing SNAP Scores

If you are missing information from the scoring period either because a flow sheet is missing or because the baby was transferred out, or died during the scoring period complete the SNAP screen using the information that is available and make a note in the comments box regarding the number of hours the scoring period is based on. Deaths For all babies who are admitted to the NICU and die you will need to verify the cause of death by a) asking the attending physician and b) checking the death certificate to see what is listed. Note that the autopsy report may not be completed for several weeks. If a baby dies during the SNAP scoring period you should abstract the score regardless of how many hours of the scoring period the baby lived. Please make a note in the comments box for these cases indicating the length of time the score was based on. You should also talk to your Site Investigator about getting a log of all delivery room deaths (live born babies only) from Pathology. Do not enter these infants in the database, but if possible keep a separate list indicating name, date and time of birth and death, birth weight, gestational age, cause of death and whether or not resuscitation was attempted. Rounding Most numeric entries need not be rounded (head circ, temp, pH can all be entered as a decimal). However, some numeric entries that need to be rounded for entry should be rounded as follows: 2.4 and smaller should be rounded to 2; 2.5 and larger should be rounded to 3. Generally, if values are listed as “<”, as in “<2”, score as one less than what is written, e.g. <2 would become 1 (or 1.9 in the case where an integer is not required). Readmissions

For those sites just beginning data collection; a “readmission” on the patient log/admission screen can only be scored if this patient has been entered previously in the database. Therefore, any patient who is readmitted to your unit and whose initial admission is prior to the data collection start date would be scored as wither inborn or outborn AND not a readmission (given that their initial visit was not recorded in the database).

For all readmissions use the same record number (hospital chart number) followed by an ‘a,’ then ‘b’ for the next readmission, etc. Such that the first admission the record # will be e.g. 123456, the first readmission # would be 123456a, and the second readmission # would be 123456b. Missing Values Be sure to record something for each data item where asked. If the information asked for is unavailable enter the missing value designated as “-9” or the missing date value designated as “40/01/01” (Jan 1,’40). This is a way for us to make sure that data items are not left blank accidentally. Computer Regional Settings

Before beginning data collection, it would be helpful to synchronize your computer's date settings with the databases. You can do this by selecting the start button in the lower left corner of your computer screen, under settings select control panel, then choose regional settings. Under the Date tab, change the date style to either yyyy/mm/dd or yy/mm/dd. You may also choose to use the date setting yy/mmm/dd. This way when you enter the date 02/09/08, when you leave the field it shows up as 02/Sep/08. You may find this cuts down on errors (i.e. if you were to type 02/08/09 for example, you could easily see that it was backwards when it rearranges to become 02/Aug/09.)

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CHAPTER FOUR: ERROR CHECKING Computer data checks

The computer program has several error checking systems in place. At a primary level, the program performs error checks during data entry, to help ensure accurate data capture. For instance, there are checks for “reasonableness”. For example, if you entered ‘66:66’ as a value for time, the computer will generate an immediate error message prompting you that this is not a valid entry, and will require you to change this value before proceeding. At a secondary level, once you have completed an entire patient file and wish to submit your data a final error check will be run. You will not be able to submit your data until all the errors have been corrected. A third error check occurs after your data has been submitted to the NCC, in which you may be contacted by the Study Coordinator to confirm any unusual entries. If you enter something unusual, please write an explanation in the “comments” section to save the time of rechecking the chart. If you receive an error message that is not self-explanatory, contact the NCC for advice. Abstractor checks Some data items are not easily checked by the computer. It is crucial that everything you enter into your computer makes sense to you. If it doesn’t, please ask questions of the NICU staff to protect the data’s integrity. In addition, please read through each data screen before closing it to make sure you have filled in all the information correctly. A random sample of 5% of all charts will be re-abstracted by a different abstractor to check for accuracy and consistency. Abstractor organization It is important for data abstractors to be organized to help alleviate errors and missed or overlooked data. In order for the NCC to determine the difference between missing data that is unavailable from the chart versus data that may simply have been overlooked by the abstractor it is crucial that the abstractor enter appropriate missing values. A missing value should be assigned anytime a data field can not be completed because the information is not directly noted or can not be inferred from information anywhere in the patient’s complete chart. Abstractors are also advised to keep a separate excel file to keep track of which patient records are complete (following discharge) and which records are still missing information and need to be followed up on. The excel file can also be a way to record which infants have had name changes in order to avoid confusion or duplicate entries.

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CHAPTER FIVE: CONFIDENTIALITY AND PROFESSIONALISM Confidentiality There are several levels of confidentiality that must be maintained. Firstly, the data in the computer represents personal information about patients. To maintain full confidentiality, the computer will encode all information from the medical chart that identifies the patient before it is transmitted to the NCC. The NCC will be able to identify patients by their study ID number, but only the Research Assistant will be able to match that number to a specific patient. Secondly, the SNAP can be used to compute a risk of death. However, the predictive accuracy of this estimate has never been tested. Therefore, the laptop program will not compute the SNAP, or the related mortality risk. We have done this to preclude inappropriate use of the SNAP by the bedside clinicians in making medical decisions. Finally, we do not have human subjects’ approval to obtain information about the babies from the parents. Feel free, however to answer any questions parents or clinicians may have about the general nature of the study. Professionalism It is important that you maintain a professional image while working in the NICU. This includes making sure you are not disruptive of parents visiting their sick babies, of clinicians caring for the babies, or of any other NICU routines. Your dress should be professional and your appearance neat at all times you are working, even when working evening or weekend hours. In addition, please try to keep your voice low and your behaviour calm so as not to disturb any sensitive babies. NICU staff interactions

The NICU staff are often very busy caring for the babies. They are also an excellent resource for information on specific babies or specific medical terminology. In your interactions with the staff, it is important to ask the bedside nurses before using the medical chart, to keep the chart in the immediate area and to make sure the nurses know where to locate the chart if they need it. In addition, be sure that your presence is not interfering with the nurses’ care of patients.

Human Subjects Approval We do not have authorization to approach the parents for information, obtain any specimens either directly or as biologic discards, or request or suggest treatment or procedure.

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GENERAL DATABASE USE

*Please see the section on Computer Regional Settings in Chapter 3 prior to beginning data collection.

CNN/EPIC Management Centre

Collect Data Enter the database to begin data collection.

Update When prompted by the Network Coordinating Centre (NCC), select this option to download the most recent updates for your database.

Upload Upload your data to the central server at the NCC by selecting this option. This should be done at least once a month, but may be done more frequently to ensure data is properly backed-up and will not be lost, should your lap-top become inaccessible.

Exit To exit the system

Search

Allows you to search all records entered in the database. Highlight the record number and select “yes” to bring up the selected record number.

Submit Once you have completed all data entry for a particular file, “submit” the file. This will run a final error check and inform you of any errors that will need to be corrected before uploading your data.

End

Closes the data collection portion of the database and returns you to the CNN/EPIC management centre.

Prev Takes you to the previous record in the dataset.

Add Allows you to add a new record set to the database.

Next Takes you to the next record in the dataset.

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PATIENT LOG/ADMISSION SCREEN DEFINITIONS

Abstractors are responsible for abstracting every eligible admission to the NICU. Eligible babies are infants who stay in the NICU for at least 24 hours OR who die/are transferred to another level 2 or 3 facility within 24 hours. (Note: For purposes of this study, time of admission is defined as the time of the first set of recorded vital signs.) Once a baby has been admitted to your NICU, you will have ultimate responsibility for the data collection on that baby, regardless of outcomes or transfers. Note that some hospitals consider their resuscitation room an extension of the NICU. If this is the case at your hospital then you can include data occurring in the resus room provided that (a) the infant is considered to be ADMITTED TO THE NICU AND (b) NICU NURSES ARE PRESENT AND RECORDING VITAL SIGNS. If the infant is NOT considered admitted to the NICU, then therapies administered in the resuscitation should NOT be included in data collection, with the exception of surfactant administration. Record only patient data relating to the specified admission to your NICU. You are not to record treatments/ resolved diagnosis provided at another hospital or during a previous admission.

INFANT IDENTIFICATION

Infant First Name First name(s) of infant as recorded on the medical record. Do not type in “Baby” “Boy” or “Girl” or their abbreviations. If the infant is not given a first name upon admission to the NICU leave this field blank, you can come back to it and enter it later. If the infant has still not been given a first name upon discharge, simply leave this field blank.

Infant Last Name Family name of infant as recorded on the medical record. If hyphenated or double name, record both. For multiple births use “#” followed by birth order (e.g. Jones #2). If fetal death occurs at or before 20 weeks GA do not count in birth order. If the chart does not specify date of fetal death, use the date the death was discovered. If the baby has a change of last name, do not record the change here or in the comments box. However, you may want to note the change for yourself elsewhere for future reference.

Birth weight Weight in grams at birth as recorded in birth hospital. If there are discrepant values, use the birth hospital value for out-born babies. If birth weight is unavailable, use the first weight taken up to 24 hours of life. If birth weight is only listed as an estimate, record the estimate, but make a note in the comments box that this is an approximate birth weight. If there is no weight given up to 24 hours of life select the missing value (-9).

Date of Birth Date of birth according to obstetric and/or admitting records. Enter as YYMMDD. If date of birth is unknown enter the missing date value (40/01/01).

Time of Birth Enter time of birth in military time (24 hour clock). If infant is born at midnight, record as 0:00 (where midnight (00:00) is the first minute of a new day; for example: 23:59 on Jan 3rd and 00:00 on Jan 4th is 1 minute later). If birth time is unavailable, leave blank.

Date of Admit Date of admission to the study NICU. This may be different than date of birth for late admissions or out-born babies. Enter as YYMMDD.

Time of Admit Time of admission is defined as the time of first vital signs (at least one vital sign) recorded in the NICU. Do not include time in transport for out-born infants, or time in the delivery room for inborn infants. Write time of admission in military time. If time of admission is midnight record as 0:00. If admission time is unavailable leave blank.

Coded ID Coded ID number assigned automatically by the program. No data entry required. It is the unique identifier for a single admission for a study patient.

Site

Character/Hospital Code for study site. No data entry required.

Study Number Study ID Code. No data entry required.

Record Number Medical record number of the infant at the study hospital. This is very important to enter as all screens are linked via this number. When a patient is readmitted simply use the same record number followed by an ‘a,’ then ‘b’ for the next readmission, etc. For example, the first admission record # will be 123456, the first readmission # would be 123456a, and the second readmission # would be 123456b.

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GESTATIONAL AGE

Pediatric Estimate Best pediatric estimate of gestational age (GA) at birth given in full weeks. Preferences among estimates should be: 1) attending note 2) scored Ballard/Dubowitz sheet 3) other estimate referenced in chart. If there is no pediatric GA listed in any of the above places, but the baby is referred to as a term baby, enter 40. If there is only an obstetric GA listed in the chart, then assume both estimates are the same (pediatric GA=obstetric GA) and record as such. Also referred to as EGA or neonatal GA. Do not use autopsy estimates of gestational age.

Obstetric Estimate Best obstetric estimate of gestational age in full weeks according to delivering obstetrician. If noted to have discrepant obstetric last menstrual period (LMP) and ultrasound (U/S), select the U/S dates if done earlier than 25 weeks GA. Otherwise, select LMP dates. If there is no specific obstetric GA listed, but the obstetric records refer to the baby as a term baby, enter 40. If there is only a pediatric GA listed, then assume both estimates are the same (obstetric GA=pediatric GA) and record as such.

APGAR SCORE

Apgar at 1 minute One minute Apgar score. If discrepancy, select the missing value (-9).

Apgar at 5 minutes Five minute Apgar score. If discrepancy, select the missing value.

Apgar at 10 minutes Ten minute Apgar score if recorded. The recording of such a score usually denotes a worrisome event in

the delivery room (depressed infant) and is noted as a measure of recovery or prolonged depression. If discrepancy, select the missing value.

INFANT GENDER

Infant Gender

Record sex of infant. If sex is listed as ambiguous, but the baby is later said to be male or female, score as ambiguous. If not listed or unknown, score as such.

Births this pregnancy

Total number of births in this pregnancy. For example triplets=3, twins=2. Record which birth order the infant is as part of the name (e.g. Jones #2). If fetal death occurs at or before 20 weeks, this is not counted under births this pregnancy. If the chart does not specify date of fetal death, use the date the death was discovered. If fetal death of a twin occurs in utero, make a note in the comments box.

ADMISSION DETAILS

Admission Stat Admission status at study hospital. Score as inborn, out-born (transferred in) or readmission to study

hospital. If out-born or readmission, specify in “transferred from”. If a patient is born at your hospital, discharged home a couple days later (without admission to the NICU) then admitted to the NICU from home this is considered an “inborn late admission” score as inborn, but do not record anything in the “transferred from” field. If a patient is discharged to another hospital for 24 hours or less for surgery or other medical treatments not provided at your hospital, then this does not count as a readmission. For these cases, make a note in the comments box regarding the date and reason for transfer, then continue data collection for the rest of the patient’s stay in the data set you have already created. For patients transferred out longer than 24 hours, you will need to begin a new data set and consider this now a readmission (with record # 123456a).

Admission Head Circ.

The first Occipito-Frontal Circumference (OFC) (Head Circumference) measured after admission, as noted in the physician or nursing notes. Record in cm. If discrepancy between two measurements, select that measured by the nurse. If the first recorded head circumference is after the first 48 hours of admission, record the missing value.

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Admission Temp. Body temperature in Celsius as recorded at admission to the study NICU. This temperature need not be taken in the first 12 hours of life. Record the first temperature listed within five hours of admission. If the first recorded temperature is after 5 hours of admission record the missing value. For readmissions, record the temperature at the time of this second admission to the study NICU. Use axillary or rectal, but not skin probe temperatures (temperature of the baby taken by the incubator). If the temperature is recorded as “<36” score as 35.9.

Admission Weight

Weight in grams as recorded at admission to the study NICU. When no admission weight is recorded, score the birth weight for infants admitted the same day as birth, otherwise score the first weight taken up to 24 hours following admission. If no weight taken in the 24 hours following admission record the missing value.

Transferred From Complete this item only if the infant was out-born, readmitted, or a first time admission from home. Record the name of the hospital the infant was transferred from most recently. If the city location of the hospital is not included in the hospital’s name, include the city name after the hospital’s name; i.e. BC Children’s Hospital, Vancouver. Do not complete this item for inborn late admissions from home. If an infant was admitted from home (because born at home), score as an out-born and type “home” here (this is NOT considered an inborn late admission from home).

Birth Hospital Complete this item only if the hospital of birth is different from the transfer hospital. If born at home, transferred to another hospital and then transferred to the study hospital type “home” as the birth hospital. If the birth hospital is different from the transfer hospital and is unknown, enter “unknown” under birth hospital.

PAYOR

Provincial Plan Check if infant has provincial insurance coverage on admission. Provincial coverage is considered if mother

has a personal health number (PHN), regardless of whether she has additional insurance coverage such as Blue Cross or Manulife. Only score insurance if mother has no PHN but some other form of insurance.

Insurance Check if infant has insurance other than provincial coverage, e.g. foreign insurance. Only score insurance if mother has no PHN but some other form of insurance.

Other Check if infant has no insurance on admission.

Comments Please enter comments for the NCC here. Do not record notes to yourself in this box. Use this item sparingly, it is not necessary to note additional maternal/obstetric information not required on the maternal screen. If you are unsure of the classification of a given congenital anomaly, diagnosis, or have a question regarding data collection please contact the NCC for advice, do not enter your question here.

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MOTHER/OBSTETRIC SCREEN DEFINITIONS

Record information on this screen according to the birth mother’s information. If infant is placed in foster care, do NOT record details regarding the foster family here.

MOTHER IDENTIFICATION

Mother First Name First name of mother as recorded on medical records. Do not enter abbreviations. Leave blank if unknown.

Mother Last Name Family name of mother as recorded on medical records.

Date of Birth Mother’s date of birth entered as YYMMDD. If only age is given use XX0101 where XX is the year of birth. If

date of birth or age is unknown enter the missing date value (40/01/01).

Date of Admit Mother’s date of admission to birth hospital entered as YYMMDD. If date of admission is unknown enter the missing date value (40/01/01).

Chart Number Mother’s hospital record number for all inborn infants. For out-born infants enter -9.

P.H.N. Mother’s personal health number if mother has provincial coverage. If mother does not have provincial coverage or PHN is unknown record the missing value.

Lone Parent Record whether the mother is considered a lone parent or not. If the father is documented to be involved in the social care of this child (i.e. not just financial) score no for lone parent. If father is unknown, or not involved, score yes for lone parent. If the involvement of the father is unknown, score unknown.

Mother Education Choose from the scroll down list the highest level of education completed by the mother at the time of birth. Junior High refers to the completion of grade 10. If mother’s education is unknown or not recorded, score as such.

Ethnicity Choose from the scroll down list the race of the mother. If there are different races recorded and the infant’s birth certificate is available, use the race listed on the birth certificate. If the mother’s race is unknown, record as such.

Residential Postal Code

Postal Code of mother’s primary residence. Record the 6 digit number/letter code. This should be completed for all babies, including out-born. If unknown enter the missing value (-9).

ANTENATAL HISTORY

Gravida The number of times a woman has been pregnant. Including all abortions, live and still births. Note that this

number includes the current pregnancy, therefore if this is the mother’s first pregnancy enter ‘1’. Also abbreviated as G.

# Antenatal Visits Check the appropriate box for the number of antenatal visits the mother has had for the current pregnancy. Check as either 4 or less visits OR more than 4 visits. If unknown leave blank

Date of first U/S Date of first antenatal ultrasound if less than 20 weeks GA. If greater than 20 weeks or unknown record the missing date value. If the first ultrasound date is not given but the GA at first ultrasound is, estimate the date of first ultrasound, by counting back from GA at birth date.

Total Abortions The total number of both spontaneous (miscarriages) and therapeutic (planned) abortions of mother to date.

Antenatal Corticosteroid TX

Antenatal corticosteroid treatment given to mother prior to delivery. If dates of administration are available , score as noted in #1. If dates are not available, but completeness is discussed, score as noted in #2. If dates and completeness are not discussed, score as in #3. In no information is available, record as unknown.

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Antenatal Corticosteroid TX (cont.)

1) Complete defined as receipt of at least one dose of corticosteroids (bethmethasone, beta celestone, dexamethasone, cortisone, dihydrocortisone, but not prednisone) 24 hours or more before delivery and 7 days or less before delivery. (Therefore complete refers to two doses). Partial defined as at least one dose given less than 24 hours or more than 7 days before delivery. If the chart discusses obstetric information, but does not mention steroid administration, assume “no” steroids given. 2) If no dates of administration are given, but the chart refers to “complete” or “partial” doses, score as such. 3) If no dates of administration are given and the chart does not refer to completeness, but indicates that steroids were administered score as “partial”. If it specifies that two or more doses were administered (e.g. weekly beta), score as “complete”.

Number of Courses Number of antenatal corticosteroid courses given to mother prior to delivery. If not mentioned or unknown score the missing value. Note: course is NOT synonymous with dosage. 1 'complete' course is 2 doses (1 dose 24 hrs+ before delivery and 1 dose 7 days or less before delivery) 2 ‘complete’ courses then is 4 doses.

BIRTH SUMMARY

ROM date Date of rupture of maternal membranes (ROM) (either artificial or natural) recorded as YYMMDD. If ROM

occurred at the time of birth, enter the date and time as the birth date and time. If unknown enter the missing date value.

ROM time Time of rupture of maternal membranes (ROM) in military time. If rupture of membrane time is at midnight, record as 0:00. If ROM occurred at the time of birth, enter the date and time as the birth date and time. If unknown, leave blank.

Labour Initiation Type of labour initiation, whether none, spontaneous, augmented (speeding up labour), or induced (getting labour started). If unknown record as such. Augmentation is defined as medications given to increase the strength and/or speed of contractions.

RISKS-OPTIONAL DATA COLLECTION

Risks Check all risks (drugs, alcohol and cigarettes) that apply for this pregnancy. Do not record for mothers who

used prior to being pregnant. But do record for those mothers who used while unaware they were pregnant, although they may have stopped once they became aware of their pregnancy. The boxes do not define quantity so do record use of alcohol/drugs even if described as social use only. Drugs includes all recreational drugs (ie. marijuana, cocaine, heroin, etc.) as well as abused prescription drugs know to do damage to a developing fetus (ie. codeine, methadone).

Cig # per day Record average number of cigarettes smoked per day during this pregnancy. If unknown enter the missing value. If no cigarettes had during pregnancy leave blank. Note that an average pack of cigarettes contains 20 cigarettes, if stated mother smoked half a pack per day, score as 10 cigarettes a day.

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OBSTETRIC

Prenatal Care If the mother had at least one prenatal care visit prior to hospital admission during which delivery occurred, score as ‘some’. Otherwise, score as ‘none’. If a pregnancy is dated by ultrasound (U/S) (other than on this admission) or if the notes indicate the mother had prenatal screens (rubella immune or hepatitis status) assume there was some prenatal care. If there are no obstetric records, select “unknown”.

Chorioamnionitis Chorioamnionitis is defined as inflammation of the chorion and amnion. Answer yes, no or unknown to a diagnosis of chorioamnionitis during pregnancy, labour or delivery.

Tocolysis Tocolysis is defined as the delaying/halting of preterm labour. Answer yes, no or unknown to medical tocolysis during labour.

Diabetes Answer yes, no or unknown regarding mother’s status as a diabetic. This includes both gestational diabetes as well as previous maternal diabetes (i.e. prior to conception).

Maternal Hypertension Preeclampsia

Record whether maternal hypertension or preeclampsia are present or not, or whether this information is unknown. If obstetric information is noted, but maternal hypertension is not mentioned, select “none.” If there is no obstetric data in the chart, select “unknown.” Common abbreviations for this include: HTN, PIH, HELLP and PET. “Questionable HTN,” “question of HELLP syndrome” or “rule out PET” without more information should be scored as unknown.

Delivery Type Record whether the delivery was vaginal or by cesarean section. If obstetric information is noted, but delivery type is not mentioned, “vaginal” may be assumed. If vaginal can be inferred (e.g. “vacuum extraction”), score vaginal. If there are no obstetric records, select “unknown.”

Presentation

Presentation on day of delivery. This should be recorded as: VERTEX: Head first, includes OP (occiput posterior), hand presentation, or BREECH: All types - footling, frank, etc.; or OTHER: Includes shoulder, transverse, brow, face, oblique vertex, and compound presentations. If delivery is vaginal and there is no mention of presentation select “vertex.” If delivery is by C-section and there is no mention of presentation, OR there is no obstetric data in the chart, select “unknown.” If a baby was converted to vertex presentation for delivery by c-section, score the initial position of the baby. If vertex presentation can be inferred (e.g. “tried vacuum extraction”), score vertex.

Was systemic antibiotics given to mother?

Record whether systemic antibiotics were given to the mother in the 24 hours prior to delivery. This includes antibiotics given only enterally or parentally, not topical antibiotics. If antibiotics were given to the mother, choose yes from the scroll down list under ‘antibiotics given to mother?’ and complete the start/end dates as well as the type of antibiotic administered. If the dates are unknown record the missing value. If the type of antibiotic given is unknown score as such. If no antibiotics given or if this item is unknown, leave start/end dates and antibiotic type blank and choose ‘no’ or ‘unknown’ respectively under ‘antibiotics given to mother?’

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SNAP SCREEN DEFINITIONS

SNAP on day one should be scored from the time of admission (defined as the time of first vitals in the NICU) for twelve (12) hours. Values occurring during an operation should be included. If you are missing information from the scoring period either because a flow sheet is missing, because the baby was transferred out, or died during the scoring period complete the following screen using the information that is available and make a note in the comments box regarding the number of hours the scoring period is based on.

Vital Signs: Vital signs recorded while a baby is agitated/crying should generally be recorded. Score only non-zero values

recorded in the chart for babies who are dying (i.e. do NOT score the low heart rate as zero for babies who die during a scoring period).

Values listed as a range should be scored as the midpoint. Values listed as “< a certain value” should be scored as

one less than the value listed (e.g. a low temp of <34 should be scored as 33.9). Similarly, values listed as “> a certain value” should be scored as one more than the value listed.

Lab Values: Lab values should be included in the scoring period if they are drawn during the scoring period. Time of draw

should be taken from the flow sheet when this is explicitly recorded. If the time of the draw is not explicitly recorded on the flow sheet, assume the time the lab received the samples is within 15 minutes of the draw (in other words, include values listed as occurring within 15 minutes of the end of the scoring period).

Computer values should generally be considered more accurate than flow sheet/progress note values unless they are

clearly being discounted by the clinicians. Lab values discounted by clinicians should not be recorded on SNAP. Hemolyzed values are acceptable. Pathology blood draws, cord specimens and other non-blood draws (CSF, urine) should not be scored on SNAP. Do not score “diluted” lab values or samples that are contaminated.

Blood Pressure: High Highest mean arterial pressure (MAP), also called mean blood pressure (MBP), during the time period, as recorded in the nursing flow sheet. Arterial line pressures and cuff pressures should be weighted equally in choosing high/low values. If these values are very different though, ask in the NICU or contact the NCC for advice. If only systolic and diastolic pressures are recorded, assume mean blood pressure = diastolic + 1/3 (systolic - diastolic). E.g. 55/43: MBP = 43 + 1/3 (55-43) = 47. If only one blood pressure is recorded during the scoring period, enter this value as both the high and low value.

Blood Pressure: Low Lowest mean arterial pressure (MAP), also called mean blood pressure (MBP), during the time period, as recorded in the nursing flow sheet. Arterial line pressures and cuff pressures should be weighted equally. If these values are very different though, ask in the NICU or contact the NCC for advice. If only systolic and diastolic pressures are recorded, assume mean blood pressure = diastolic + 1/3 (systolic - diastolic). If only one blood pressure is recorded during the scoring period, enter this value as both the high and low value. Do NOT score the low blood pressure as 0 for babies who die during a scoring period.

Heart Rate: High Highest heart rate during the time period sustained for more than one minute continuously. Do not include transient heart rate values that reflect bradycardia associated with apnea/desats. If only one heart rate is recorded during the scoring period, enter this value as both the high and low value.

Heart Rate: Low Lowest heart rate during the time period sustained for more than one minute continuously. Do not include transient heart rate values that reflect bradycardia associated with apnea/desats. If only one blood pressure is taken during the scoring period, enter this value as both the high and low value. Do NOT score the low heart rate as zero (0) for babies who die during a scoring period.

Respiratory Rate: High Highest respiratory rate sustained for more than one minute during the time period. Count spontaneous respirations only. If on ventilator with no breaths above the vent, score as zero (0). At some sites you may need to subtract the vent rate from the listed respiratory rate in order to find the number of spontaneous respirations.

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Temperature: Low Lowest body temperature during the time period (axillary or rectal but not skin probe, which is the baby’s

temperature recorded through the isolette) recorded in Celsius.

Serum pH: Low

Lowest pH during the time period. This may be obtained by arterial (ABG), capillary (CBG) or venous (VBG) blood gases.

Urine CCs Total CCs of urine output during the time period. Do not divide by birth weight. If notes indicate that 20% or more of the total output for the time period was lost/unmeasured (recorded as mixed with stool, “VOID”, or overflow) then record the missing value. To calculate whether 20% was lost, if all urine output values list specific numbers, determine whether the uncertain values (CCs recorded as mixed with stool or overflow) make up 20% of the total CCs. If some values are not recorded at all (recorded as “VOID”) then determine whether the uncertain values (unmeasured diapers) make up 20% of the total number of diapers.

Seizures If only one seizure was confirmed, score as “single.” If more than one seizure was confirmed, score as “multiple.” Otherwise, check “none.” Confirmed is defined as witnessed by 2 or more clinicians or diagnosed by EEG. Use of antiepileptics (phenobarbital) ALONE is not enough evidence for diagnosis. However, if antiepileptics are ordered by one clinician, and seizure is observed by a DIFFERENT clinician, assume the seizure is confirmed.

BLOOD GASES Record only arterial blood gases, if there are no arterial blood gases recorded during the scoring period then leave this entire section blank and select N/A for each of the 3 blood gases. If there is only one arterial blood gas, enter the information required in the first line of blood gas with lowest pO2, and select N/A for the remaining lines, etc.

Blood Gas with lowest pO2

Select the arterial blood gas (ABG) with the lowest pO2. If there are several blood gases at the same lowest pO2, record the one occurring first. Record the FiO2 (21% - 100%) and MAWP (in cm-water) at the time blood was drawn, and the pH, PO2 and PCO2 from this blood gas. FiO2 should be recorded as the missing value if the baby was on blow-by oxygen at the time of the draw or if the FiO2 is unavailable. If the baby was on room air, record FiO2 as 21. If the baby was on nasal cannula O2 during the blood gas collection score ‘5’ as the FiO2. FiO2s listed while “bagging” should be recorded. MAWP-If on CPAP only, you may use CPAP value as MAWP if there is no MAWP listed. No distinction is made between nasal (facial) and endotracheal CPAP. If MAWP recordings to do not correspond with blood gas times, assume constant MAWP between recordings. MAWP should be recorded as zero (0) if the baby was not receiving assisted ventilation (mechanical vent or CPAP) at the time of the draw (i.e. nasal cannula, blow-by oxygen or room air). MAWP should be recorded as the missing value if the baby was receiving hand-bagging or if MAWP is unavailable.

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Blood Gas with highest MAWP

Select the arterial blood gas with the highest mean airway pressure. If this is the same gas recorded above in the lowest PO2 row, select the gas with the next highest MAWP instead. If there are several blood gases at the same highest MAWP, record the one with the lowest PO2. If there are several gases with the same highest MAWP and the same lowest PO2, record the gas occurring first. If MAWP is ‘0’ for the entire scoring period because the baby was never on assisted ventilation OR, if no MAWPs are available, leave this row blank, and enter ‘0’ (‘-9’) for MAWP in the 1st and 3rd rows. Record the FiO2 (21% - 100%) and MAWP (in cm-water) at the time blood was drawn, and the pH, PO2 and PCO2 from this blood gas. FiO2 should be recorded as the missing value if the baby was on blow-by oxygen at the time of the draw or if the FiO2 is unavailable. If the baby was on room air, record FiO2 as 21. If the baby was on nasal cannula O2 during the blood gas collection score ‘5’ as the FiO2. FiO2s listed while “bagging” should be recorded.

Blood Gas with highest MAWP (cont.)

MAWP-If on CPAP only, you may use CPAP value as MAWP if there is no MAWP listed. No distinction is made between nasal (facial) and endotracheal CPAP. If MAWP recordings to do not correspond with blood gas times, assume constant MAWP between recordings. MAWP should be recorded as zero (0) if the baby was not receiving assisted ventilation (mechanical vent or CPAP) at the time of the draw (i.e. nasal cannula, blow-by oxygen or room air). MAWP should be recorded as the missing value if the baby was receiving hand-bagging or if MAWP is unavailable.

Blood Gas with highest FiO2

Select the arterial blood gas with the highest FiO2. If this is the same gas recorded above in the lowest PO2 row OR in the highest MAWP row, select the gas with the next highest FiO2 instead. If there are several blood gases with the same highest FiO2, select the one with the lowest PO2. If there are several gases with the same highest FiO2 AND the same lowest PO2, select the gas occurring first. Record the FiO2 (21% - 100%) and MAWP (in cm-water) at the time blood was drawn, and the pH, PO2 and PCO2 from this blood gas. FiO2 should be recorded as the missing value if the baby was on blow-by oxygen at the time of the draw or if the FiO2 is unavailable. If the baby was on room air, record FiO2 as 21. If the baby was on nasal cannula O2 during the blood gas collection score ‘5’ as the FiO2. FiO2s listed while “bagging” should be recorded. MAWP-If on CPAP only, you may use CPAP value as MAWP if there is no MAWP listed. No distinction is made between nasal (facial) and endotracheal CPAP. If MAWP recordings to do not correspond with blood gas times, assume constant MAWP between recordings. MAWP should be recorded as zero (0) if the baby was not receiving assisted ventilation (mechanical vent or CPAP) at the time of the draw (i.e. nasal cannula, blow-by oxygen or room air). MAWP should be recorded as the missing value if the baby was receiving hand-bagging or if MAWP is unavailable.

NURSING

Patient-Nursing Ratio Refers to nursing time being taken up by a patient on the day that SNAP is scored. This number represents

how many babies per nurse e.g. A score of 2 would imply a 2:1 ratio, meaning 2 babies are being cared for by 1 nurse. A score of 0.5 implies a 1:2 ratio, meaning 1 baby is being cared for by 2 nurses (or ‘half’ a baby per nurse). Refer to your unit’s nursing assignment book. If the ratio changes during the 12hr SNAP period, use the ratio that applies for the majority of the time. If unknown enter the missing value.

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NTISS SCREEN DEFINITIONS General: NTISS should be scored from the time of admission (defined as the time of first vitals in the NICU) for twenty-four (24)

hours and on Day 3 from 0:00am to 23:59pm. In the final calculation of scores for NTISS, points are assigned only for the most intense therapeutic intervention. For example, a patient who began a scoring period on nasal CPAP and was then placed on mechanical ventilation, would receive only final points for mechanical ventilation. In completing thee scoring period data collection, however, both of these respiratory therapies should be selected, as this provides maximal information regarding the patient’s hospital course. Review both the NICU flow sheet and the nursing/physician progress notes in order to obtain all valuable information regarding the performance of procedures. Therapies administered during an operation should be included.

Medications: The best strategy is to check the medication sheets to confirm that each medication was administered during the time

period. Score medications (diuretics, aminophylline, narcotics, steroids) administered during the time period whether given po, pg, ng, IV, IM or aerosol. Score any medications classified as pressor, antibiotic, acidosis treatment, insulin drip, IVIG and “other” (unscheduled) only if the medication was administered IV (parenteral), IM or via aerosol (inhaled, nebulized). For categorizing medications into types refer to appendix I.

RESPIRATORY

Supplemental O2 Receipt of continuous enriched oxygen concentration (>.21 FiO2) by oxyhood, nasal cannula, nasal catheter, facemask or other forms of respiratory support. Continuous means that the patient is receiving oxygen throughout the time period and not just in brief episodes as needed, ie. during feeds. “Blow-by” oxygen does not count unless it is the mode of oxygen administration used in a transport situation. Do not score oxygen given as part of a hyperoxia test.

CPAP Use of Continuous Positive Airway Pressure (or Continuous Negative Airway Pressure). This may be administrated either by a nasal prong or nasopharyngeal CPAP apparatus, or via an endotracheal tube. Nasal cannula oxygen (occasionally labeled “prongs”) does not count as CPAP, but should be counted as Supplemental O2. Do not assume that “prongs” means nasal cannula: score as CPAP if there is pressure recorded, otherwise score as Supplemental O2. Do not score facial CPAP as CPAP, even if there is a pressure recorded.

Mechanical vent. Use of conventional mechanical ventilation during the scoring period, regardless of IMV rate. If pavulon\pancuronium was used then score as mechanical ventilation with muscle relaxation.

Vent. with relaxant Mechanical Ventilation along with administration of muscle relaxants (pancuronium, pavulon, succynyl choline (sux), vecuronium (vec)). At least one dose of relaxant must be given during the scoring period. Residual effects of drug given before the beginning of the scoring period do not count. Score HIFI with relaxants as HIFI only. In this case, do not score Pavulon (or other muscle relaxants) under “other meds.”

High freq. vent. Use if HIFI (high frequency ventilation, by oscillator, jet or flow-interrupter) at any time during the SCORING PERIOD. Score HIFI with relaxants as HIFI only. In this case, do not score Pavulon (or other muscle relaxants) under “other meds.” Also abbreviated as HFO or HFOV.

Surfactant Receipt of exogenous surfactant replacement therapy (Bles, Exosurf, Survanta, Curosurf, Infasurf) during the scoring period.

Intubation Undergoing an intubation procedure during the scoring period. This can be placement of new ETT, the exchange of an existing ETT for a new one (for example replacing of an oral tube with a nasal tube) or the reinsertion of an ETT which had become dislodged. Continuous presence of an ETT does NOT score points, nor does re-taping of an existing ETT. Do not count intubation occurring prior to the scoring period, such as intubation in the delivery room. Nasal prong CPAP insertion does not count as endotracheal intubation.

ECMO On Extra Corporeal membrane Oxygenation (ECMO) at any time during the scoring period. ECMO starts when the patient is removed from pump/bypass, not at the time of decannulation.

Nitric Oxide Treatment with nitric oxide (NO) by inhalation. This is currently an experimental protocol, but is likely to come into wider use. It is included on the NTISS checklist in order to identify treated infants and to track the frequency of use.

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TRACHEOSTOMY CARE

Routine Tracheostomy routine care on any patient with a tracheostomy in place for more than 48 hours.

New, <24 hr Presence of a tracheostomy placed surgically within the scoring period or the 24 hours preceding the scoring period. Do not double count this with Major Operation.

VASCULAR ACCESS

Peripheral IV Presence of one or more intravenous catheters (including heparin locks for drug administration) during the

scoring period.

Central venous Presence of a central line (CVL) during the scoring period, including: umbilical venous lines (UVL), Broviac lines (or other surgically placed, i.e. CVL lines) or percutaneous (“spaghetti”) lines which are placed centrally. Score lines regardless of whether central placement is achieved. Do not score lines that are never successfully placed. Where it is unclear whether the line was successfully placed, score based on whether the line has begun infusing solutions or not. CVP monitoring is scored separately.

Arterial line Presence of any arterial line (umbilical (i.e. UAL) or peripheral (i.e.. RAL)) during the scoring period. If the arterial line is monitored for on-line blood pressure, score “Arterial Pressure Monitoring” as well.

DRUG THERAPY

Antibiotics: 1-2 agents or >2 agents

Receipt of intravenous antibiotics during the scoring period. Topical antibiotics should not be scored. If one or two antibiotics are administered concurrently, select “1-2 agents.” If three or more antibiotics are administered concurrently, select “>2 agents.” If three antibiotics are administered during the scoring period, but one is terminated before another is initiated (only two are administered concurrently), select “1-2 agents.” Antibiotics include acyclovir, amphotericin, ampicillin, cefazolin, cefotaxime, clindamycin, fluconazole, gentamicin, kefzol, penicillin and vancomycin.

Diuretics: Enteral or Parenteral

Administration of any diuretics during the scoring period. If any of the diuretics are administrated intravenously at any time during the scoring period, select “parenteral.” If all diuretics are administrated orally (po\pg), select “enteral.” If no diuretics are given, do not score. Diuretics include: aldactone (spironolactone), diamox, diuril (chlorothiazide or CTZ), hydrochlorothiazide (HCTZ) and lasix (furosemide).

Aminophylline etc. Theophylline, aminophylline or caffeine administration PO or IV during the scoring period.

Narcotic-bolus Any single or multiple dose (also known as “push”) administration of narcotics, IV or PO during the scoring period that is not a continuous infusion. Narcotics include fentanyl, meperidine, methadone, morphine, morphine sulphate (MSO4) and opium solutions (i.e. Dilute tincture of opium (DTO)).

Narcotic-infusion Any continuous infusion of narcotics during the scoring period. Narcotics include fentanyl, meperidine, methadone, morphine, morphine sulphate (MSO4) and opium solutions (i.e. Dilute tincture of opium (DTO)).

Indomethacin Receipt of any dose (complete or not) of indomethacin (Indocin) during the scoring period.

Acidosis Rx Use of IV bicarbonate (“neut”), THAM or NaHCO3 (sodium bicarbonate) during the scoring period. These drugs are usually used to treat serious acidosis, although this is not a requirement for scoring. Use of acetate in the IV fluid (i.e. Na acetate or K acetate) does not count for this variable.

Steroid - post-natal Steroid use (IV, po or nebulized but not topical) during the scoring period, regardless of indication. Steroids include beclamethasone, beclovent puffs, cortisol (solucortef), dexamethasone (decadron), hydrocortisone, methylprednisolone (solumedrol) and prednisone.

Anti-convulsant Anti-convulsants given regardless of reason for administration, during scoring period. Includes ativan,

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diazepam, dilantin, diphenyl hydantoin (DPH), lorazepam, phenobarbital, phenytoin and Valium. K+ binding resin Administration of potassium binding resin (Kay-exylate) either via gavage or rectal tube during the scoring

period.

Erythropoietin Administration of erythropoietin during the scoring period.

Insulin Use of insulin (IM or IV but usually by infusion) during the scoring period.

Potassium drip Initiation of a concentrated potassium (K+) infusion or bolus during the scoring period. Concentration must be at least 60 meq\L (6 meq\100 ml) or 450 mg\100ml or 60 mmol\L (6 mmol\100ml) (Conversion: 1 mEq\L of potassium = 75 mg\L)

IVIG Intravenous Immune Globulin (IVIG) given for any reason during the scoring period. Usually documented in the nursing medication sheets as single dose medication.

Other - unsched. Any parental or inhaled drug beyond those already noted (antibiotics, diuretics, aminophylline, narcotics, indomethacin, acidosis treatment drugs, steroids, anticonvulsants, erythropoietin, insulin, potassium, surfactant, pressors). Such drugs might include sedatives, inhaled agents or clotting factors. In general, drugs given by mouth are not scored. However, if you are unsure contact the NCC for advice. Do not count routine vitamin K injections, eye prophylaxes, routine IV fluids (including electrolyte (NaCl, KCl) and heparin additives) or glucose solutions (i.e. D10W). Do not count hepatitis vaccine. Do not score calcium given routinely in IV fluids, but do score calcium bolus\push ordered separately. Do not score any topical medications or vitamins.

MONTIORING

Frequent vital 3 out of the 4 vital signs (heart rate, respiratory rate and either temperature or blood pressure) recorded in

nursing notes\flow sheet 2 or more times in any given hour, OR 6 or more times in any 8 hours. Ventilator rate may be substituted for respiratory rate where applicable. Score based on heart rate and either temperature or blood pressure only, for babies on HiFi ventilation when no respiratory rates are listed. Skin probe temperatures (the baby’s temperatures taken through the incubator) do not count as temperature for this item.

ECG monitoring Use of a cardiac and\or apnea monitor during the scoring period.

Warmer/incubator Use of an infant warming device during the scoring period. This includes warming tables and incubators. Short term use in the delivery room does not qualify, nor do portable warming lights.

Non-invasive O2 Use of any non-invasive blood gas monitoring devices during the scoring period. Such devices include: Transcutaneous O2 monitors (TcO2 or TCM), Transcutaneous CO2 monitors (TcCO2), Pulse oximeters (SaO2, SpO2, or Sat monitors), End-tidal CO2 (ETCO2), Mass Spectrometer.

Arterial pressure On-line arterial pressure monitoring during the scoring period. This may be umbilical or peripheral. Score transducer (invasive), but not Doppler (non-invasive) monitoring. Points for this variable are additive with those for arterial line.

CVP monitoring Monitoring of Central Venous Pressure (CVP) at any time during the scoring period. This is differentiated from CVL by the use of a pressure transducer. CVL presence should be scored separately.

Urinary catheter Presence of a urinary catheter regardless of reason used during the scoring period. This should be scored when present in addition to scoring strict monitoring of I & O.

Quantitative I-O’s Strict measurement of Input & Output for any portion of the scoring period. This would be marked by numeric measurement of urinary output, such as weighted diapers or measured output from a urinary catheter. Qualitative output (checks or plus signs for voids) do not score.

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# Blood draws Number of separate blood draws during the scoring period, regardless of the number of tests obtained per

blood draw, or the volume withdrawn for tests. A blood draw is indicated by a cluster of tests noted on the flow sheet as drawn at the same time. Glucose reagent strips (Dextrostix, others) also count as a draw if done by heel or finger prick. If no blood draws occurred during the scoring period enter 0, if number of draws unknown enter the missing value.

PROCEDURES

Transport of patient

Transport of patient within the hospital or between hospitals if applicable (e.g. radiological procedure such as fluoroscopy, CAT scan or MRI). Do not score for outborn infants who arrive via ambulance. It is mutually exclusive with trips to the operating room or cath lab (Major Operation and Minor Operation). Do not score if the infant is transported for non-medical reasons (e.g.. baby transported to be with the mother) and do not score for circumcision.

Thoracentesis Needle thoracentesis or paracentesis (diagnostic (i.e. lumbar puncture (LP) or therapeutic) during the scoring period. If the needle aspiration occurs as part of chest tube insertion then it should not be counted.

Dialysis Dialysis initiated or continued during the scoring period. The presence of a dialysis catheter alone is not sufficient.

Chest tube: 1 or >1 Presence of a chest tube at any time during the scoring period. If more than one chest tube was present concurrently, select Chest tube “>2" instead. Needle or Angiocath aspiration alone should be scored as Thoracentesis.

Operation: Minor or Major

Operations initiated or continued during the scoring period. Operations defined as all operations/procedures performed in the operating room and/or requiring anesthesia. If multiple operations were performed under the same anesthesia episode, classify the operation as major if at least one of the procedures was major. Major and minor operations are mutually exclusive. Minor operations include: bronchoscopy, cytoscopy, cryo/laser treatment, balloon septostomy, cardiac catheterization, CVL placement (with anesthesia), examination under anesthesia, gastrostomy, herniorrhaphy, laryngoscopy, nephrotomy, PDA ligation, rectal biopsy, skin grafting and surgically placed catheters. Do NOT double count tracheostomy. Major operations include: laparotomy (bowel resection, ileostomy, repair of abdominal omphalocele, NEC), thoracotomy (ASD closure, BTS for tricuspid atresia, coarctation repair, vascular ring operation) and craniotomy (placement of a Hickman catheter, reservoir or shunt CNS, re-section of an occipital encephalocele, myelomeningocele or omphalocele). Operations do not include: Chest tube placement, cutdown venous access, ECMO, extra digit removal, peripheral arterial line placement, thora/paracentesis and UAL or UVL placement. For a complete list of major/minor and exclusion operations see appendix II.

Pericardial: Centisis

Pericardiocentisis performed at any time during the scoring period. This might be done to remove fluid or air. Centesis done as part of pericardial tube placement should score only as Pericardial Tube-not both. However, if a pericardiocentesis is followed several hours later by tube placement, both should be scored.

Pericardial: Tube Presence or placement of a pericardial tube during any part of the scoring period . Points can also be scored for a pericardiocentesis performed before pericardial tube placement, but not concurrent with it.

METABOLIC / NUTRITION

Gavage feeding Feeding using tubes to deliver formula. Specific modes include: naso-gastric (NG) or oro-gastric (OG), naso

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duodenal (ND), or via gastrostomy. This should be scored if any feeding is delivered in this manner, including water. Do NOT score gavage feeding if a gavage tube was not being used to deliver formula, but rather was in place only to deliver medications. Gavage feeding is often marked in nursing flow sheets with numbers in the “feeding type” column (i.e. “#8" for use of an 8-french feeding tube) or with an abbreviation such as PG, NG, G or g.

IV amino acid Parenteral nutrition (PN)\hyper alimentation (HAL) initiated or continued during the scoring period. The IV stock must contain amino acids (AA) to be scored as parenteral nutrition; high glucose concentration alone is not sufficient.

IV fat emulsion Use of IV fat emulsion (intra-lipids, lipids) initiated or continued during the scoring period.

Phototherapy Phototherapy initiated or continued during the scoring period.

TRANSFUSION

Platelets Transfusion of platelets given at any time during the scoring period.

White blood cells White Blood Cell (neutrophil) transfusion initiated during the scoring period.

Partial exchange Partial plasma exchange initiated during the scoring period. This is done to treat polycythemia (high

hematocrit). It does not matter whether volume is replaced with albumin or normal saline (but not PRBC’s or Whole Blood). Fluid given as part of exchange should not count as part of volume for the variable volume expansion.

2X volume exchange

Exchange transfusion initiated during the scoring period. The volume of blood (double volume, single volume, partial) does not make any difference. The blood volume used in the exchange transfusion should not be counted towards the transfusion or extensive transfusion variable.

PRBC CCs Total CCs of blood given in transfusions initiated during the scoring period, even if some volume was administrated after the scoring period. Do not include volume from transfusions initiated before the scoring period, even if some volume was administrated during the scoring period. This can be either packed cells (PC, PRBC) or whole blood. Blood used for exchange transfusions does not count. If no blood was transfused during the scoring period enter 0, if unknown enter the missing value.

CARDIOVASCULAR

Pressors: 1 or >1 Use of intravenous blood pressure medications (pressors or vasoactive drug infusions) given concurrently

during the scoring period. If only a single infusion is administered at once, score as “1". If a second infusion was in use at the same time during the scoring period then “>1” should be scored instead. Blood pressure medications include adenosine, dobutamine, dopamine, hydralazine, isoproterenol (isuprel), nitroglycerine (NTG), nitroprusside (nipride), phenylephrine, priscoline, prostaglandins and tolazoline. Epinephrine (epi drip) should be scored here unless given as part of CPR. If given as part of CPR, score as CPR only. Do not score inhaled nitric oxide here.

Pacemaker: Standby or Used

If cardiac pacemaker available on standby but never used during the scoring period, then select “standby”. If the pacer is actually used during the scoring period select “used.” Any form of external pacing qualifies including direct pacer wires, trans-esophageal pacing, trans-catheter.

Volume Exp CCs Total CCs of volume support initiated during the scoring period, even if some of the volume is administered after the scoring period. This should be distinct from routine IV stock, and includes albumin (5%), albumin (25%), fresh frozen plasma (FFP), lactated ringers (LR), NaCl bolus, normal saline (NS, 0.9% Saline), plasmanate and thawed plasma. If different types of volume expansions are given during the scoring period, include the sum of all these. This should not include bolus volume administered of bicarbonate, THAM or RBCs. Do not score such things as D10W, .25NS, .5NS or routine HepNS. If no volume given for expansion support score as 0, if volume unknown score as the missing value.

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CPR Cardio-Pulmonary Resuscitation (CPR) administered during the SCORING PERIOD. There must be documentation of cardiac compressions for either bradycardia or electro-mechanical dissociation. The use of bicarbonate and\or epinephrine alone is insufficient.

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TRANSPORT SHEET SCREEN DEFINITIONS

Complete the Transport Sheet for all outborn or readmit infants transported into the study NICU via helicopter or ambulance from another hospital. Do not complete for: inborn late admissions (see defn. under admit stat, pg. 10), patients transported between wards within your hospital, patients admitted for the first time from home or those born at home and transported to the hospital by ambulance. Do not complete for infants transported out of your hospital.

Date of transport Date of transport into the study NICU. If transport occurred over midnight (i.e. two days) record the date that

transport began (i.e. date transport team left departing hospital). Score as YYMMDD.

Distance of transport

Refers to the distance between the referring (departing) hospital and the destination (arriving) hospital, one way, entered in km. If distance is unavailable, approximate the distance for both ground and air transport. Enter as km.

Departure time Record the time at which the transport team leaves the departing hospital. Do not record the time at which the transport team first arrived at the departing hospital. Note: the time at which the transport team first begins recording vitals, is also NOT necessarily the departure time. If at midnight, record as 0:00. (Where midnight (00:00) is the first minute of a new day; for example: 23:59 on Jan 3rd and 00:00 on Jan 4th is 1 minute later). If unknown leave blank.

Arrival time Record the time at which the transport team arrives at the receiving hospital and vitals are being taken by your study hospital. This time is often analogous to the admission time.

Mode of transport Record mode of transport as air or ground. Indicate both methods of transport by checking both boxes. If unknown leave blank.

Team Personnel Record personnel in attendance throughout transport. MD (Doctor), RN (Registered Nurse), RT (Respiratory Technician) EMT (Emergency Medical Technician). Indicate multiple types of personnel in attendance by checking multiple boxes. If unknown leave blank.

PRE-TRANSPORT

Refers to the outcomes on arrival of the transport team to the referring (departing) hospital (i.e. the condition in which the team finds the infant on arrival). If, for some reason, the transport team does not assess the patient for a particular item, use measurements taken from the referring hospital within one hour of the team’s arrival. If no measurement within one hour is available for a particular item, record the missing value (for Temp. & BP) or leave the item blank (for Resp. status & noxious stimuli).

Temperature Body temperature in Celsius. Use axillary or rectal, but not skin probe (temperature of the baby taken by the

incubator). If the temperature is recorded as “<36” score as 35.9. If no appropriate recording enter the missing value.

Systolic BP Systolic blood pressure in mm Hg. Arterial line pressures and cuff pressures should be weighted equally. If more than one blood pressure is recorded, score the average blood pressure. If no appropriate recording enter the missing value.

Respiratory Status: Severe

Record if infant is intubated and receiving mechanical ventilation. Also record if the infant is not intubated, but suffers from apneic spells or gasping or if the infant is being bagged. If the patient’s respiratory status is unknown leave this item blank.

Respiratory Status: Moderate

Record if respiratory rate is greater than 60 resps per minute OR oxygen saturation recording (SPO2) is less than 85 regardless of mode of ventilation (i.e. CPAP or oxygen treatment). Therefore, a patient breathing less than 60 resps per minute but who is actually on CPAP will be scored as ‘respiratory status-none’. This is because we are looking to capture changes in patient condition as opposed to severity of the condition itself. If both severe and moderate symptoms are displayed, score as severe (the higher of the two).

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Respiratory Status: None

Record if respiratory rate is less than 60 resps per minute AND oxygen saturation recording (SPO2) is greater than 85 regardless of mode of ventilation (i.e. CPAP or oxygen treatment). Therefore, a patient breathing less than 60 resps per minute but who is actually on CPAP will be scored as ‘respiratory status-none’. This is because we are looking to capture changes in patient condition as opposed to severity of the condition itself.

Response to noxious stimuli: none

Record if infant shows no sign of response when exposed to a noxious stimulus. Also record if the infant has had seizures or been given muscle relaxants (i.e. pancuronium) within the last few hours of the scoring time. If the patient’s response to noxious stimuli is unknown leave this item blank.

Response to noxious stimuli: lethargic response

Record if infant has a lethargic response (i.e. slow to respond, no crying, etc.) when exposed to a noxious stimulus.

Response to noxious stimuli: withdraws vigorously

Record if infant shows a vigorous response when exposed to a noxious stimulus. A vigorous response is characterized by behaviour such as crying or withdrawing. Score the most intense response demonstrated.

TRIPS SCREEN

TRIPS items are post-transfer items that refer to the outcomes on arrival of the transport team to the NICU of the destination hospital. These measurements can be taken by the destination NICU staff. As we are validating this score, we would like to capture all infants and not just those transferred into your NICU. The same 4 items are recorded here as in pre-transport on the transport sheet: temperature, systolic blood pressure, respiratory status and response to noxious stimuli. Refer to the definitions listed above for these items, but remember to record them in the appropriate scoring time period. TRIPS has 3 scoring times, once in the hour (or first two hours) of admission, once in the twelfth hour (plus or minus an hour) following admission and once in the 24th hour following admission (plus or minus an hour). Please note that TRIPS is being collected for ALL babies entering your NICU, regarless of whether they were transported or not. i.e., Inborns, outborns and readmissions.

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DIAGNOSIS/PROCEDURES SCREEN DEFINITIONS Score all major diagnoses and procedures that occur ONLY at your hospital on this screen. If a baby is

transferred into your NICU, score only issues pertaining to the baby at the time of transfer into your NICU. If the initial diagnosis of a current issue occurred at the transferring hospital, use the admission date to your NICU as the diagnosis date and make a note regarding diagnosis/treatment given elsewhere if relevant in the comments box. Do not score outcomes that are resolved before transfer into your hospital. Instead make a note in the comments box where applicable.

Likewise for readmission records, you are not required to record diagnoses that have already been resolved in the initial admission. Note that only ongoing and new issues pertinent to this particular (readmission) visit need be recorded. Do not score questionable diagnoses except where the data item has an uncertain/suspected category (i.e. RDS, seizures). If there are conflicting diagnosis, where available use autopsy findings as they are more reliable than diagnostic tests.

Items on the left-hand side of the screen (“before day 28") will generally be discovered before day 28 of life. Do not

spend a lot of time searching for these diagnoses after day 28 of life. However, if any of these items are found after 28 days of life (i.e. pneumothorax, seizures), do score them.

BEFORE DAY 28

PDA Treatment of a patent ductus arteriosis (PDA). Classify PDA by treatment, regardless of severity of PDA:

Score “None” if: no PDA noted. PDA not considered serious enough to treat. PDA treated w/ indo. in the first 24 hours of admission and not restarted after 24 hours of admission Score “Indomethacin @ > 24 hours” if: PDA was treated with indomethacin (indocin). Since some centers use prophylactic indomethacin, count PDA treatment only if the first dose is administered after the first 24 hours of admission (even if your site does NOT give indomethacin prophylactically). If indomethacin is started in the first 24 hours of admission, discontinued and restarted after 24 hours of admission count as indomethacin treatment. Do not score indomethacin given during the first 24 hours of admission, even if the baby is diagnosed with a definite PDA, unless treatment is discontinued and then restarted at a later date. Score “Ligation” if: there was surgical ligation of a PDA, without indomethacin treatment previously. Score “Both” if: there was both indomethacin treatment and surgical ligation of a PDA. Score “Not Treated” if: a PDA was diagnosed as “clinically significant/severe” but was never treated do to other medical reasons, i.e. renal failure, too unstable for operation. Make a note in the comments box regarding the reason treatment for PDA was not given. Score “Not Applicable\Unknown” if: the baby died before a diagnosis could be made or if the information is not available. If a PDA was diagnosed and treated prior to admission to your hospital and is no longer a current issue, score as ‘none’ and make a note in the comments box regarding the resolved PDA and the treatment given at another site if known.

Ischemic encephalopathy

Ischemic encephalopathy according to the definition of Sarnat (Stages 2 and 3). This item only applies to infants >2000 grams birth weight. Both of the following criteria have to be met in order to score this item: (1) history of perinatal event consistent with injury (fetal distress, low apgars, need for resuscitation), and (2) abnormal neurologic exam over the first 2-3 days of life. Score “None” if: the baby’s birth weight was >2000 grams and both of the above criteria are not met. Score “Mild” if: the neurologic exam included an isolated seizure and disturbances of tone or mentions mild

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Ischemic encephalopathy (cont.)

or moderate HIE. The baby may be lethargic but not comatose. (Sarnat Stage 2) Score “Severe” if: status epilepticus, coma, loss of tone, respiratory drive, cranial nerve abnormalities or mentions severe HIE. (Sarnat Stage 3) Score “Not Applicable/Unknown” if: the baby’s birth weight was <2000g or the baby died shortly after birth before a diagnosis could be made.

RDS Respiratory Distress Syndrome (RDS), also called Hyaline Membrane Disease (HMD). Score RDS by certainty not severity. Mild and severe RDS should be scored in the same way. RDS should be diagnosed within the first two days of life. Score “None” if: ⋅the clinicians describe “respiratory distress” without a specific diagnosis of RDS. ⋅there is no RDS according to any of the following three definitions. Score “Definite” if: (1) a chest x-ray shows definite RDS, or (2) clinicians specify definite RDS based on typical symptoms (grunting and retractions), and/or a typical chest x-ray (diffuse granularity, “ground glass”), OR (3) surfactant (bles, exosurf, survanta, curosurf, infasurf) is administered beyond 2 hours of age. Whenever possible, score RDS by the CXR diagnosis. If the CXR expresses doubt about the diagnosis, review the physician diagnosis with attention to dates of diagnoses as compared with x-ray dates, and find out if surfactant was given. There is a hierarchy among the three sources in the order listed (chest x-ray, then physician diagnosis and then surfactant administration) to be used when there are conflicting diagnoses. However, when one of the sources is giving you definite information, and the others are not, score RDS according to what definite information you have. Also if you can ask a clinician why they are diagnosing the baby contrary to what the evidence seems to be saying, then you should do so. Score “Uncertain” if: there was possible RDS but the clinicians recorded doubt about the diagnosis. Do not score uncertain if you are unsure about what the clinicians are saying. In this case, investigate further in the chart, or ask one of the clinicians in the NICU. Score “Unknown/NA” if: the baby died shortly after birth and no diagnosis was made.

Seizures Occurrence of seizures at any time during the hospital stay. Score “None” if: there were no seizures or seizure like movements mentioned during the hospital stay. Score “Suspected” if: ⋅observed by only one clinician ⋅there were movements of uncertain significance observed by more than one person. Descriptions of seizure like movements should be considered movements of uncertain significance when not accompanied by a diagnosis of seizures or administration of phenobarbital. Score “Definite” if: ⋅witnessed by 2 or more clinicians ⋅diagnosed by EEG ⋅there is one clinical observation of seizure like movements coupled with administration of phenobarbital or with a diagnosis of seizures by a different clinician. The use of antiepileptics/ anticonvulsants (i.e.. phenobarbital) is not alone evidence of definitive diagnosis, but can be considered as confirmation if prescribed by a second clinician. When an EEG is normal and contradicts a seizure diagnosis, score according to attending physician\neurologist diagnosis made after reviewing the EEG results.

Pneumothorax Occurrence of pneumothorax, as diagnosed by chest x-ray, thoracentesis with documented removal of air or autopsy report. While placement of a chest tube is a common response, it is not necessary for diagnosis.

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This field does not include pulmonary interstitial emphysema (PIE).

Pneumothorax date Date of occurrence of the first definite pneumothorax by chest x-ray, documented needle aspiration or autopsy report. If the first time a pneumothorax is diagnosed is by autopsy report, score the date of death (not the date of autopsy) as the pneumothorax date. If the baby is transferred in with a pneumothorax, record the pneumothorax date as the admission date and record the date of the first pneumothorax diagnosed at the transferring hospital in the comments box, if available. If date of first pneumothorax is unknown, enter the missing date value (40/01/01). If no pneumothorax during this hospital visit, leave blank.

OPERATIONS / PROCEDURES

*Record only operations that occurred at your hospital for this particular visit. Do not include operations that occurred at another hospital or during a previous admission (if this is a readmission). If relevant make a note of these instances in the comments box.

Laparotomy Laparotomy (abdominal exploration) for surgical resolution of a variety of problems including diaphragmatic hernia (repaired from below the diaphragm), atresias, volvulus, closure of omphalocele or gastroschisis, surgical treatment of necrotizing enterocolitis, bowel resection, ileostomy, mucus fistula, bladder and epispadias repair, pyloromyotomy, or other major abdominal procedure. For a complete list of procedures included under laparotomy see appendix II.

Thoracotomy Thoracotomy (surgical exploration of the chest) for a variety of reasons including diaphragmatic hernia (repaired from above the diaphragm), cystic adenomatoid malformation, pneumonectomy, lobectomy, ASD closure, BTS for tricuspid atresia, coarctation repair, vascular ring operation, or other major thoracic procedure. PDA ligation should be scored as a minor, not a major operation and so it should not be scored here. For a complete list of procedures included under thoracotomy see appendix II.

Craniotomy Operation on the brain or spinal cord, including closure of a myeloschisis, re-section of an occipital encephalocele, or myelomeningocele, placement of a Hickman catheter, shunt revisions, placement or reservoir or shunt for drainage of cerebro-spinal fluid or other major CNS procedure. For Reservoir or shunt placement for drainage of CSF, record here under total number of major operations, and under Reservoir or shunt CNS under IVH/ROP screen-hydrocephalus. For a complete list of procedures included under craniotomy see appendix II.

ECMO On extra corporeal membrane oxygenation (ECMO) at any time during the hospital stay. ECMO given as part of an operation should be scored here, but a note should also be made in the comments box that ECMO was given as part of an operation and not as a procedure unto itself.

Total # of operations: Major

Major operations are counted here and categorized above. If multiple procedures are performed during one anesthesia episode, count as one operation (classified as either major or minor according to the highest level of any of the procedures). If multiple major operations performed, indicate each classified above, separately (but count as only 1 under total #). Major operations include laparotomy, thoracotomy, craniotomy, and ECMO. If no operations were performed, record 0 (zero). For a complete list of major operations see appendix II.

Total # of operations: Minor

Minor operations are counted here. Minor operations include bronchoscopy, cytoscopy, laryngoscopy, nephrotomy, rectal biopsy, surgically placed catheters, CVL placement (in operating room or with anesthesia), PDA ligation, gastrostomy, tracheostomy, balloon septostomy, cardiac catheterization, herniorrhaphy, examination under anesthesia, cryotherapy or laser therapy for ROP, and skin grafting. Operations do not include chest tube placement, UAL or UVL placement, peripheral arterial line placement, cutdown venous access, extra digit removal and thora/paracentesis. For a complete list of minor operations and operation exclusions see appendix II.

NEC

Necrotizing enterocolitis (NEC) according to Bell’s criteria, stage 2 or higher. If there is definite pneumatosis (air in the bowel wall) or portal/hepatic air (air in the liver) diagnosed by x-ray, or if there is a surgical or autopsy diagnosis of NEC, score by highest level of treatment (“surgical Rx” > “medical Rx”) received. If surgical/autopsy diagnosis conflicts with x-ray diagnosis, the surgical/autopsy diagnosis takes

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NEC (cont.)

priority. X-rays showing free air WITHOUT pneumatosis do NOT count as NEC diagnosis. Bloody stools without pneumatosis may lead to a suspected diagnosis and treatment, but is not counted as NEC diagnosis. Please make a note of bowel perforations (that are not NEC) in the comments box. Score “None” if: there was no NEC diagnosed according to our definition during the hospital stay. Score “Unknown/NA” if: the baby died shortly after birth and no diagnosis was made.

NEC Date Date of the first definitive diagnosis of NEC (by x-ray of pneumatosis, or by surgery). Record as YY/MM/DD. If pneumatosis is suspected on x-ray and then NEC is diagnosed definitively by surgery/autopsy, score the date of onset of NEC as the date of the first x-ray that showed a suspicion of pneumatosis. If unknown score the missing date.

Highest Indirect Bilirubin

Highest indirect bilirubin during this admission period. Also known as unconjugated bili. If no bili tests where done during this hospital stay record the missing value.

Highest Indirect Bilirubin: Date

Date of highest indirect bilirubin during this admission period. If several dates on which the same highest bili occurs, record the first date. Record as YY/MM/DD. If no bili tests or date of highest bili unknown enter the missing date value (40/01/01).

CONGENITAL ANOMALIES / OTHER DIAGNOSIS

Congenital Anomaly Type

Record all diagnosed congenital anomalies of a patient. Record only confirmed anomalies, anomalies that are “questionable” or “pending” should not be recorded. Anomalies are listed alphabetically and grouped under the systems they relate to. Selecting the appropriate system from the system scroll down list will limit the anomalies that appear in the type scroll down list. If you can not find a specific anomaly listed here check appendix IV for additional help in identifying how a given anomaly is recorded in the database. If you think a major anomaly is not listed, or if it requires specification, contact the NCC for advice.

Other Diagnosis Record additional major diagnoses included in the scroll down list provided. Record only confirmed diagnoses, diagnoses that are “questionable” or “pending” should not be recorded. Note that some diagnoses may be worded differently at various hospitals. For example a diagnosis of “thrombocytopenia” is listed on the scroll down list as “neonatal thrombocytopenia”. If you can not find a given diagnosis in the list, check appendix III for additional help in identifying how a given diagnosis may be recorded in the database. If you think a major diagnosis is not listed or requires further specification, contact the NCC for advice.

Other Diagnosis Date

Record the date the diagnosis was discovered. Record as YY/MM/DD. If the baby is transferred in with a given diagnosis, record the diagnosis date as the admission date to your NICU. For infants with fetal issues, record the birth date (when same date as the admission date) as the diagnosis date. Do not record diagnoses that have resolved prior to this NICU admission. If date of diagnosis is not provided score the missing value. If no additional diagnoses are made leave this item blank.

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IVH / ROP SCREEN DEFINITIONS

Score the IVH portion of the screen based on all head ultrasounds, CAT scans and MRIs done during this NICU admission and taken during the appropriate time periods. If you come across any serious outcomes, which are not included on the IVH & ROP screen (e.g. “periventricular calcification,” “parenchymal calcification,” or “cystic parietal lesion”), make a note in the comments box. The following should not be scored here: “possible” or “questionable” diagnoses, subarachnoid hemorrhages, subdural hemorrhages, tentorial bleeds, fluid collections in the brain, arachnoid cysts, caudothalmic groove cysts, choroid plexus cysts, subependymal cysts or other cysts other than those found in the brain parenchyma (the brain itself). If there are conflicting diagnosis, where available use autopsy findings as they are more reliable than diagnostic tests. Also note that MRI findings should be used over U/S findings.

See appendix III to confirm hemorrhages that are to be included under ‘other diagnosis’ on the diagnosis/procedures screen. Record only “congenital cerebral cysts” (found in the brain parenchyma) under congenital anomalies (nervous syst); other cysts not mentioned below need not be scored.

INTRAVENTRICULAR HEMMORHAGE

GM / IVH Isolated germinal matrix/intraventricular hemorrhage. An echogenic lesion confined to the germinal matrix area, AND/OR extending into the ventricles, but not distending the ventricles with blood. Descriptors may include: “grade I or II hemorrhage,” “subependymal hemorrhage” (SEH), or “germinal matrix hemorrhage” (GMH). Score according to certainly of bleed. Score “possible” and “questionable” diagnoses as “None” Score “suggestive of…” and “most likely…” as “Probable”. Score all IVH bleeds that occur on either side. This should be based on ultrasound scans in the first two weeks of life. Score “None” if none of the ultrasounds taken during the first 2 weeks of life showed a grade I or II IVH. Score “N/A” if no ultrasounds were taken during the first 2 weeks of life in your hospital. Do not score new IVH occurring after two weeks of life here, where significant record under “intraventricular hemorrhage, first noted after 2 weeks of life” under other diagnosis on the diagnosis/procedures screen.

VE +/- GM/IVH An echogenic lesion originating in the germinal matrix area AND extending into the ventricles, AND distending the ventricles with blood (grade III hemorrhage). Also includes ventricular enlargement (“ventriculomegaly”) with or without a germinal matrix/IVH bleed. Again, as described above this should be based on ultrasound scans in the first two weeks of life and certainty of bleed/ventricular enlargement.

PEC +/- GM/IVH Parenchymal echodensities/lucencies. An echogenic lesion in the parenchyma of the brain (white matter or gray matter) in one or more ultrasound scans taken after day 21 of life. This need not be accompanied by intraventricular hemorrhages grades I-III. Descriptors may include: “grade IV IVH,” “intraparenchymal hemorrhage”, “intraparenchymal echodensity” (IPE), “periventricular cyst”, cystic encephalomalacia”, and “porencephalic cyst”. Score “None” if none of the ultrasounds taken after day 21 of life showed any echolucencies. Score “N/A” if there were no ultrasounds taken after day 21 of life in your hospital. Do not score echolucencies found on ultrasounds within the first 21 days of life, but continue to follow the ultrasound reports to see if still present after 21 days of life.

Ultrasound date nearest 6 weeks

Date of cranial ultrasound nearest to 6 weeks of life (but not before 4 weeks and not after 12 weeks), upon which Levene measurements for hydrocephalus were made. Score ultrasound reports at or after 4 weeks and before 12 weeks of life, whether or not hydrocephalus is mentioned. Score as the missing date value (40/01/01) if there were no ultrasound reports at or after 4 weeks and before 12 weeks of life at your hospital, or if the patient was discharged/died before 4 weeks of life.

Lat. Ventricle-to-falx size in mm (Levene’s definition)

Measurement in mm from lateral-most extent of the ventricle to the falx on coronal ultrasound scan, nearest to 6 weeks (but not before 4 weeks and not after 12 weeks) of life (Levene, Arch Dis Child 1981;56:900-904). If ventricular size is mentioned on the ultrasound report, you should record this value for all babies who have had a head ultrasound after 4 weeks and before 12 weeks of life, even if the ultrasound is normal. When the size is not specified, but is recorded as “normal” score the missing value (-9). If a ventricle cannot be accurately measured due to a severe bleed, score -9. If there is no ultrasound at or after 4 weeks and

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before 12 weeks of life, or if the infant was discharged/died before 4 weeks of life, score as -9. If the two ventricles are both measured, score the worse (larger) value.

Hydrocephalus by Levene

Score the hydrocephalus measurement by Levene ventricular index based on the ultrasound nearest 6 weeks (but not before 4 weeks and not after 12 weeks) of life. If the U/S nearest 6 weeks is unclear, vague, ambiguous or missing, or if the U/S nearest 6 weeks makes reference to a previous report (e.g. “no change from previous report” or “improvement from last U/S report”) refer to past or future reports for clarification. Descriptors may include “PHH” (Post Hemorrhagic Hydrocephalus), “Post shunt placement for ventriculomegaly”, “ventriculomegaly” and “dilated ventricles”. Score “None” if: there is an ultrasound at or after 4 weeks and before 12 weeks of life, and the ultrasound nearest 6 weeks shows no hydrocephalus, or questionable hydrocephalus. Score “Mild” if: there is an ultrasound at or after 4 weeks and before 12 weeks of life, and the ultrasound nearest 6 weeks shows mild hydrocephalus. Score “Moderate” if: there is an ultrasound at or after 4 weeks and before 12 weeks of life, and the ultrasound nearest 6 weeks shows hydrocephalus or moderate hydrocephalus or the equivalent (>97%, <4mm). Score “Severe” if: there is an ultrasound at or after 4 weeks and before 12 weeks of life, and the ultrasound nearest 6 weeks shows severe hydrocephalus or the equivalent (>97%, >4mm). Score “N/A” if: ⋅there is no ultrasound at or after 4 weeks and before 12 weeks of life. ⋅there is an ultrasound at or after 4 weeks of life, but the ultrasound nearest 6 weeks is not available. ⋅the infant was discharged/died before 4 weeks of life.

Reservoir or Shunt CNS

Check the box to indicate reservoir or shunt placement for drainage of cerebro-spinal fluid during this hospital admission. Also, count towards total # of major operations under D&P screen.

RETINOPATHY OF PREMATURITY (HIGHEST STAGE)

Left/Right Eye: Stage

Maximum stage of retinopathy of prematurity (ROP) in left/right eye as defined by the International Committee on Retinopathy of Prematurity (ICROP). Score according to the grade of ROP assigned on an eye exam done by an ophthalmologist. If there is no explicit grade listed, then score according to the descriptions given by the ICROP:

-None denotes that there are no indications of an immature retina or ROP from the eye exam.

-Stage 1 is characterized by a demarcation line between the normal retina near the optic nerve and the non-vascularized retina more peripherally. The photograph above shows the orange vascularized retina on the left, and the gray peripheral non-vascularized retina on the right. A white demarcation line can be seen between the two. Multiple small abnormally branching vessels can sometimes be seen leading into the demarcation line.

-Stage 2 ROP has a ridge of scar tissue and new vessels in place of the demarcation line. The white line

now has width and height, and occupies some volume. It may take on a pink color as it becomes more vascularized. Small tufts of new vessels ("popcorn vessels") may appear posterior to the ridge.

-Stage 3 ROP shows an increased size of the vascular ridge, with growth of fibro-vascular tissue on the

ridge and extending out into the vitreous. Fibrous scar tissue is beginning to form in this stage, with attachments between the vitreous gel and the ridge.

-Stage 4 refers to a partial retinal detachment. The scar tissue associated with the fibrovascular ridge contracts, pulling the retina away from the wall of the eye. There may also be an exudation of fluid under the

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Left/Right Eye: Stage (cont.)

retina, contributing to the detachment. Stage 4 is further categorized depending upon the location of the retinal detachment. In Stage 4A, the detachment does not include the macula, and the vision may be good. In Stage 4B, the macula is detached, and the visual potential is markedly decreased.

-Stage 5 ROP implies a complete retinal detachment, usually with the retina pulled into a funnel-shaped configuration by the fibrovascular scar tissue. Eyes with stage 5 ROP usually have no useful vision, even if surgery is performed to repair the detachment.

-Imm is the abbreviation for ‘immature’ retina. If a patient’s eye exam states “imm” or “immature” look to see if this progresses further into a stage of ROP. If not, then score as ‘imm’.

- Score “N/A” -If there is no eye exam during this hospital stay.

Left/Right Eye: Zone

Record location of ROP in left/right eye by zone. Score according to eye exam having the greatest degree of ROP severity. Disease severity is worst in Zone 1 (optic disk to macula), very serious in Zone 2, (macula to periphery) and worrisome in Zone 3 (peripheral vision). If there is no eye exam or if stage is scored as “none”, score as “N/A”.

Left/Right Eye: Plus

Presence of plus disease at any stage of ROP in the left/right eyes. Plus disease is indicated by extreme tortuosity and redness of vessels, often accompanied by rapid progression of ROP disease. If there is no eye exam, score as “N/A”.

Left/Right Eye: ROP Treatment

Record if cryotherapy (Cryo) or laser photocoagulation (Laser) treatment was required for Retinopathy of Prematurity (ROP) in the left/right eye during this hospitalization. This should also be counted as a minor operation under “Total number of operations” on the diagnosis/ procedures screen. Score “None” if: there was no surgical treatment (i.e. either cryo or laser treatment) for any stage of ROP. Score “N/A” if: ⋅there was no eye exam during the hospital stay and therefore no diagnosis of ROP made. ⋅there was an eye exam, but the patient was diagnosed as “none” under stage. ⋅the infant was discharged/died before an eye exam was done.

Left/Right Eye: Date of ROP TX

Date of cryotherapy or laser photocoagulation treatment of ROP in left/right eye. Record as YYMMDD. If date of treatment is unknown score the missing date value. If scored “None” or “N/A” for ROP treatment than leave date of ROP treatment blank.

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CULTURES/CVL/TRANS SCREEN DEFINITIONS POSITIVE BLOOD OR CSF CULTURES

Record only positive cultures that occur at your study hospital. If a blood culture is drawn at another hospital prior to this admission visit it should not be recorded. However, if this culture is positive AND the baby is considered to have an infection at the time of arrival to your hospital, this should be record as an infection episode under diagnosis of infection (given that this is an ongoing concern of the patient). In this instance, record the infection type according to the definitions of infection diagnosis listed in appendix V, and make a note in the comments box regarding the details of the positive culture including the organism discovered.

Date For each positive blood or CSF culture, record the date of the blood drawn, NOT the date the culture was found to be positive. Only positive cultures are listed in detail. Negative cultures are to be included in counting the total number of blood/CSF cultures, but are not listed in detail. Enter the date as YYMMDD. If date unknown score the missing value.

Organism Select the organisms found in all positive cultures from the scroll down list. For a list of organism names listed in alphabetical order with their coded abbreviations see appendix VII. If an organism does not appear in the scroll down list, contact the NCC to have it coded. Record all positive cultures even if noted or thought to be contaminants. If multiple organisms are found in the same culture, enter each organism separately on a new line in the table. Do not record repeat cultures that are considered part of the same infection. Therefore, a second positive blood culture containing the same organism (repeat culture) is NOT included if the culture date is within 7 days of the initial positive blood culture. However, a positive CSF culture OR a positive blood culture containing a new organism IS included, even if the culture date is within 7 days of the initial positive blood culture. Any positive culture drawn after 7 days is considered a new episode of infection and should be included (regardless of the type of organism). If patients are transferred in with a positive culture, do not record here, but make a note in the comments box. Do not record information about resistance to antibiotics.

Code An organism code is automatically entered once an organism has been selected. It has been included to easily identify contaminants. A contaminant is defined as 2 or more organisms identified in a single culture or more than 1 culture if the cultures are taken on the same day. Remember to include all positive cultures, even if noted to be contaminants. (This will become more useful in identifying valid infection diagnoses in the following section “diagnosis of infection.)

Culture Source of positive culture. Choose from blood or CSF (cerebrospinal fluid).

Total # of blood cultures

Total count of all blood culture draws (regardless of whether culture is positive or negative) received by the clinical laboratory during this NICU admission. Two blood cultures taken at the same time from different sites (2 blood draws) count as two blood cultures. Two bottle aerobic/anaerobic combination count as 1 culture (1 blood draw).

Total # of CSF cultures

Total number of CSF culture draws (regardless of whether culture is positive or negative) received by the clinical laboratory during this NICU admission. If CSF obtained without culture, do not include.

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DIAGNOSIS OF INFECTION An “episode” of infection is defined as any event where infection is suspected and as a result begins with:

(a) bacteriological or viral samples taken; OR (b) antibiotics are initiated; OR (c) a diagnosis of infection is made.

If samples are taken: an “episode” of infection includes all cultures drawn within 7 days of the initial positive culture, except in the following circumstances (which indicate then a new infection episode): 1. A new organism is drawn in a repeat culture within 7 days of the initial culture draw date. 2. The same (or new) organism is drawn in a new type of culture within 7 days of the initial culture draw date

(provided neither the initial nor the new culture are blood cultures). Contaminant cultures should never be used in determining the diagnosis of an infection episode (see above under code for defn. of a contaminant). Use the flow charts in appendix VI to determine whether cultures listed within 7 days of each other may possibly be contaminants or ought to be scored as 2 separate concurrent episodes of infection. After 7 days any persistent infection should be considered a new infection episode. However, any repeat culture after 7 days that proves to be negative should be excluded entirely as it is neither the start of a new episode nor part of the previous episode (as it is beyond the 7 day limit).

Date Record the date of all diagnoses of infection. Enter as YYMMDD. If the date of infection is unknown record the date treatment began (i.e. day antibiotics initiated) otherwise, enter the missing date value. If the infection began at a previous hospital, but is still considered an ongoing concern at the time of arrival to your hospital, enter the date of admission as the infection date.

Diagnosis Type Select the diagnosis type for each episode of infection from the scroll down list according to the descriptors of infection types given in appendix V.

CENTRAL VENOUS LINES

Date In Date of insertion of a central venous line (CVL). Enter as YYMMDD. If a baby is transferred in with a catheter

in place, record the date of placement at the previous hospital. If the date of placement is unknown enter the first available date. If the first available date is the admission date to your NICU, enter the admission date.

Catheter Type Record the catheter type as: Broviac (surgically placed), Percutaneous (spaghetti, perc, picc) or Umbilical Venous (UVL/UVC). Record all central lines placed during the patient’s hospitalization, regardless of whether central placement is achieved. Do not score lines that are never successfully placed. Where it is unclear whether the line was successfully placed, score based on whether the line has begun infusing solutions or not.

Date Out Date of removal of a central venous line. Enter as YYMMDD. If a baby is transferred out with a catheter still in place, record the date of discharge as the date out. If a line is put on saline lock, enter the date out as the date the line was actually removed, not the date placed on saline lock.

TRANSFUSIONS

Date Date transfusion was initiated. Enter as YYMMDD.

Blood Record the blood product transfused from the scroll down list. Chose from packed red blood cells (PRBC),

whole blood, fresh frozen plasma (FFP), albumin, platelets, gamma-globulin and cryoprecipitate.

Pre HCT Score this field only for PRBC transfusions. Record the most recent hematocrit before the transfusion. If there is no hematocrit within the 48 hours prior to initiation of the transfusion, record the missing value.

Vol CCs Volume of blood product (in CCs) actually transfused. This may be different from the volume delivered from the blood bank (to accommodate losses in priming transfusion tubing or blood that the clinicians decided not to give). If the volume administered is not recorded anywhere, score the amount ordered by the physician, but do NOT score the amount delivered by the blood bank. If the amount ordered by the

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physician is missing as well, score the missing value. MEDICATIONS SCREEN DEFINITIONS

Refer to appendix I for a complete list of drugs and the categories they are classified under. If you are unsure what category a medication should be classified in contact the NCC for advice. Record each complete course of a particular medication as a single line. Therefore if vancomycin is given for 11 days but only given every other day, this would be scored as 1 ‘course’, and each day need not be scored separately on a new line. Generally if a medication is stopped for more than 48 hours it is considered a new ‘course’. Note: topical medications (i.e. skin creams, eye drops) are not scored, however oral medications are recorded. If a patient is transferred in on a particular medication, record the date of admission to your unit as the start date. If a patient is transferred out while still receiving a particular medication, record the discharge date as the end date, do not record the missing value.

NARCOTICS / SEDATIVES

Start Date First date of administration of all narcotic or sedative drugs given during this hospital admission. Record

regardless of method of administration (i.e. bolus or infusion). Enter the date as YYMMDD.

Type Select from the scroll down list the type of narcotic/sedative administered between the dates recorded. Some common narcotics/sedatives include: fentanyl, morphine, acetaminophen (tylenol), chloral hydrate, and midazolam. If a narcotic/sedative is not included in the list, simply add it by typing it in.

End Date Last date of administration of the listed narcotic/sedative. Enter the date as YYMMDD. If a medication is only given for 1 day, then score that day as both the start and end date.

PARALYTICS

Start Date First date of administration of all paralytics given during this hospital admission. Record regardless of

method of administration (i.e. bolus or infusion). Enter the date as YYMMDD.

Type Select from the scroll down list the type of paralytic administered between the dates recorded. These include: pancuronium (pavulon), vecuronium, succynylcholine. If a paralytic is not included in the list, simply add it. Anticonvulsants need no longer be captured here.

End Date Last date of administration of the listed paralytic. Enter the date as YYMMDD. If a medication is only given for 1 day, then score that day as both the start and end date.

ANTIBIOTICS

Start Date First date of administration of all antibiotics given during this hospital admission. Record regardless of

method of administration (i.e. bolus or infusion). Enter the date as YYMMDD.

Type Select from the scroll down list the type of antibiotic administered between the dates recorded. Some common antibiotics include: acyclovir, amphotericin B, ampicillin, gentamycin, cefotaxime, flagyl, cloxacillin and vancomycin. If an antibiotic is not included in the list, simply add it.

End Date Last date of administration of the listed antibiotic. Enter the date as YYMMDD. If a medication is only given for 1 day, then score that day as both the start and end date.

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POST-NATAL STERIODS

Start Date First date of administration of all post-natal steroids given during this hospital admission. Record regardless of method of administration (i.e. bolus or infusion). Do NOT score steroids given to the mother prior to the infant’s birth. Enter the date as YYMMDD.

Type Select from the scroll down list the type of post-natal steroid administered between the dates recorded. Common steroids include: dexamethasone, budesonide, hydrocortisone and beclamethasone. If a steroid is not included in the list, simply add it.

End Date Last date of administration of the listed narcotic/sedative. Enter the date as YYMMDD. If a medication is only given for 1 day score that day as both the start and end date.

SURFACTANT

Date of First Dose Enter the calendar date in which the first dose of surfactant was given (regardless of whether the initial dose was given while the infant was admitted to your NICU or not). The default date will be set to the birth date, however if this is not the correct date, you will need to edit this date. If the date on which surfactant is first given is unavailable, enter the missing value.

Time of First Dose Record the time in military time (24 hr clock) at which the first dose of the particular surfactant was given (should correspond to the date listed above). Record midnight as 0:00 (and the first minute of a new day; for example: 23:59 on Jan 3rd and 00:00 on Jan 4th is 1 minute later). If the time at which surfactant is first given is unavailable, leave blank.

Type Score all surfactants (i.e. BLES, surfvanta, exosurf, etc.) given to a patient. Score regardless of whether given at your hospital or at a different transferring/birth hospital. If surfactant was given at a previous hospital record all the information below if available.

# of doses Record the total number of doses of the particular surfactant given. Note that you only need record the date and time of the initial dose.

RESPIRATORY STIMULANT

Start Date First date of administration of all respiratory stimuli given during this hospital admission. Record

regardless of method of administration (i.e. bolus or infusion). Enter the date as YYMMDD.

Type Score all respiratory stimuli administered during the patient’s hospital stay. Choose from the scroll down list the type of respiratory stimuli given (i.e. caffeine or theophylline). If a respiratory stimulant is not included in the list, simply add it.

End Date Last date of administration of the listed respiratory stimuli. Enter the date as YYMMDD. If a medication is only given for 1 day, then score that day as both the start and end date.

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DAY 28 SCREEN DEFINITIONS The scoring period for “day 28” data should be from 00:00 am on day 28 of life to 23:59 (24 hours). For your

convenience the calendar date of day 28 has been calculated and is listed in red on the right upper corner of this screen. If you are missing part of the day 28 flow sheet and you can get accurate information from other sources (i.e. progress notes), then score based on these other sources. Otherwise, you should use the closest complete 24 hour scoring period (it is okay to adjust times of day), but it should not be more than 48 hours off from day 28. If the patient is transferred to another level 2 or 3 hospital prior to day 28 of life record the information on this screen when available as follows: (i) For a patient 32 weeks or less GA at birth score the entire screen. (ii) For a patient 33 weeks or more GA score only the current weight and head circumference. If the information is unavailable, score as N/A.

*In the case where a patient has had multiple admissions in the database, record day 28 data in the admission record

closest to that which it pertains to, and score N/A in any previous or subsequent admissions, it is not necessary to duplicate data.

Level of Respiratory Support

Note the highest (most intensive) level of support (None, Oxygen only, CPAP, Mechanical ventilation) received at any time on day 28. Score HIFI as mechanical ventilation. If the patient died or was discharged home or to a level 1 nursery prior to day 28 of life score as “N/A” and leave the rest of this screen blank. If there is no appropriate information score as N/A.

Oxygen % Record the first appropriate FiO2 (percent inspired oxygen) in the scoring period on day 28. Do not record the highest appropriate FiO2 in the scoring period. See appendix VIII for the definition of appropriate FiO2. If on low flow nasal cannula, record the percent of the administered oxygen instead of an appropriate FiO2. (This will be combined with the liter flow later). If the patient is receiving no supplemental oxygen, score FiO2 as 21%. FiO2s listed while on blow-by oxygen should NOT be used towards appropriate FiO2, however, FiO2s while on “bagging” or “facial CPAP” should be used if appropriate. If the information is unavailable or missing enter the missing value.

Nasal cannula CCs If the infant is receiving low-flow oxygen by nasal cannula, record the flow rate in CCs per minute. Record the first value noted in the scoring period. If calibrated as liters\minute, translate into CCs (e.g.. 1\4 liter=250 cc. 1\8 liter is 125 cc). Be sure to record the percent oxygen delivered via the nasal cannula above under ‘oxygen %’. If the infant is receiving no supplemental oxygen then enter zero. Score the midpoint for nasal cannula CCs listed as a range. If the baby is receiving assisted ventilation but is not on nasal cannula, score as ‘0’.

Mean airway pressure Record the first mean airway pressure (MAWP) noted in the scoring period. If on CPAP only and no MAWP is listed, you may use CPAP pressure (in cm’s of water) as MAWP. If ventilated, use airway pressure from ventilator records. If not on CPAP or ventilator then enter zero. If the information is unavailable, enter the missing value.

Weight Record infant’s weight nearest day 28 (within 5 days). If not weighed, enter the missing value.

Head circumference Record infant’s head circumference nearest day 28 (within 10 days). Not necessary for infants over 2000 gm at birth (in this case it is appropriate to simply enter the missing value). If the information is unavailable, or if head circumference is not measured within 10 days, enter the missing value.

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WEEK 36 SCREEN DEFINITIONS

The scoring period for “week 36” data should be from 0:00 on day one of week 36 to 23:59 (24 hours). Otherwise, you should use the closest complete 24 hour scoring period (it is okay to adjust times of the day). For your convenience, the calendar date of the first day of week 36 has been calculated where appropriate and is displayed in red on the right upper corner of this screen. Week 36 has been computed from the obstetric GA, unless there is a difference of three or more weeks between the obstetric and pediatric GA. If they differ by three or more weeks, the pediatric estimate is used.

Week 36 data need never be collected if the gestational age (see above for which gestational age to use) is 32

weeks or more. Week 36 also need not be collected if the baby is discharged home, to a level 1 nursery, or if the patient dies before 36 weeks. In these instances, score as N/A. If a baby is transferred to another level 2 or level 3 hospital before week 36 where available, score according to the receiving hospital’s records.

*In the case where a patient has had multiple admissions in the database, record week 36 data in the admission record closest to that which it pertains to, and score N/A in any previous or subsequent admissions, it is not necessary to duplicate data.

Level of Respiratory Support

Note the highest (most intensive) level of support (None, Oxygen only, CPAP, Mechanical ventilation) received on the first day of week 36. Score HIFI as mechanical ventilation. If the gestational age is 32 weeks or more or the baby dies or is transferred to a level 1 nursery before 36 weeks score as “N/A”. If there is no appropriate information score as N/A.

Oxygen % Record the first appropriate FiO2 (percent inspired oxygen) in the scoring period on day 28. Do not record the highest appropriate FiO2 in the scoring period. See appendix VIII for the definition of appropriate FiO2. If on low flow nasal cannula, record the percent of the administered oxygen instead of an appropriate FiO2. (This will be combined with the liter flow later). If the patient is receiving no supplemental oxygen, score FiO2 as 21%. FiO2s listed while on blow-by oxygen should NOT be used towards appropriate FiO2, however, FiO2s while on “bagging” or “facial CPAP” should be used if appropriate. If the information is unavailable or missing enter the missing value.

Nasal cannula CCs If the infant is receiving low-flow oxygen by nasal cannula, record the flow rate in CCs per minute. Record the first value noted in the scoring period. If calibrated as liters\minute, translate into CCs (e.g.. 1\4 liter=250 cc. 1\8 liter is 125 cc). Be sure to record the percent oxygen delivered via the nasal cannula above under ‘oxygen %’. If the infant is receiving no supplemental oxygen then enter zero. Score the midpoint for nasal cannula CCs listed as a range. If the baby is receiving assisted ventilation but is not on nasal cannula, score as ‘0’.

Mean airway pressure Record the first mean airway pressure (MAWP) noted in the scoring period. If on CPAP only and no MAWP is listed, you may use CPAP pressure (in cm’s of water) as MAWP. If ventilated, use airway pressure from ventilator records. If not on CPAP or ventilator then enter zero. If the information is unavailable, enter the missing value.

Target SaO2: Low The lowest recorded oxygen saturation (SaO2) during the scoring period (i.e. day 1 of week 36). If there is no oxygen saturation recorded or the information is unavailable, enter the missing value.

Target SaO2: High The highest recorded oxygen saturation (SaO2) during the scoring period (i.e. day 1 of week 36). If there is no oxygen saturation recorded or the information is unavailable, enter the missing value.

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DISCHARGE SCREEN DEFINITIONS Complete this screen for all patients that are discharged from your NICU, regardless of whether or not they are transferred out of your hospital or to another ward/nursery within your hospital. If a patient is transferred within your hospital enter your hospital name and the nursery name under the appropriate level of care received there. If a patient is discharged to another hospital for less than 24 hours for either surgical or medical care that can not be given at your hospital, you need not count them as a discharged patient. Make a note of the date and reason for transfer in the comments box on the patient log/admission screen and continue data collection for the rest of the patient’s hospital stay in the current data set. If however the patient is discharged for more than 24 hours, complete the discharge information and record their return as a readmission, entering the remainder of the hospital stay in the new ‘readmission’ data set.

Discharge Destination

Score the disposition on discharge from your NICU. Score “Level 1 Community” if: the baby was transferred to any term (level 1/regular/healthy baby) nursery/ community hospital. Enter the destination hospital/nursery ward name in the space provided. Score “Level 2 Community” if: the baby was transferred to a level II community hospital nursery (in which case you should follow up on this baby with the post-transfer screen). Enter the destination community hospital nursery in the space provided. Score “Tertiary Hospital” if: the baby was transferred to one of the other study sites (in which case you should follow up on this baby with the post-transfer screen) or to another tertiary care centre. Enter the destination hospital in the space provided. If the baby was transferred to the OR, and does not return to the NICU (i.e. discharged from the NICU on the way to the OR), enter the discharge disposition as OR (at your hospital), but do not score this operation on the diagnosis and procedures screen. Record any known destinations after the OR visit on the post-transfer screen. Score “Other” if: the baby was transferred under special circumstances such as to a rehabilitation hospital. Enter the destination care centre/hospital in the space provided. Score “Home” if: the baby was discharged home (or into home foster care) from your NICU. If the baby is discharged into foster care it is not necessary to make a note in the comments box. We are only interested in the type of care the baby is to receive, i.e. home care versus hospital care. However, if the infant is discharged home on palliative care, record this as discharged home and make a note in the comments box. An exception for this would be palliative patients who were actually considered moribund on admission and are then sent home. In this instance, check “moribund on admission” NOT discharge home and make a note in the comments box about continuing compassionate care at home. Score “Died” if: the baby died during this hospital stay. Score “Moribund on admission” if: the infant was declared moribund on admission to the NICU. Moribund on admission is evident by few or no therapies administered in the NICU (or no treatment other than comfort care). Physician and nursing notes should indicate no attempt to treat and/or immediate withdrawal of care on admission. This might apply to infants at the border of viability, and to infants with recognized lethal anomalies. It is vital to identify these infants, since their SNAP scores will be unusually low, yet the patient dies. If the baby is declared moribund on admission, check off this item only (do not check “died” as well).

Discharge weight Weight nearest discharge (within 5 days). Score the missing value if not weighed in the 5 days prior to discharge/transfer. This item need only be completed for infants weighing less than 2500 grams at birth. This should be completed for babies who die.

Head circumference Head circumference nearest discharge (within 10 days). Score the missing value if not measured in the 10 days prior to discharge/transfer. This item need only be completed for infants weighing less than 2500 grams at birth. This should be completed for babies who die.

Discharge Date Score the date of discharge from the NICU. Record as YYMMDD.

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SUPPORT AT DISCHARGE

If the infant was not on any of the supports listed below at the time of discharge or transfer, leave this section blank. Do NOT mark anything in this column if the baby died.

Oxygen Score this if the patient is on continuous oxygen/supplemental oxygen (FiO2 >21%) at the time of discharge/transfer. Do not score blow-by oxygen or nasal cannula oxygen given for feeds only as this is not a form of continuous oxygen.

Theophylline Score this if the patient received theophylline, caffeine, or aminophylline at any time in the 24 hours prior to discharge/transfer.

Diuretic Score this if the patient received chronic diuretics (IV or PO) at any time in the 24 hours prior to discharge/transfer.

Monitor Score this if the patient is receiving continuous cardiac or apnea monitoring at the time of discharge/transfer. If the chart does not specify and discharge is to a level 2 or 3 community hospital, score monitor at discharge. If the chart does not specify and discharge is to the routine (level 1) nursery, do not score. If discharged home, there must be clear evidence of plans for home monitoring to score this item.

Ostomy Score this if the patient has any ostomy (ileostomy or colostomy, but not tracheostomy or gastrostomy) at the time of discharge/transfer.

Gavage Score this if the patient received gavage feeding (any PG or NG feeds) at any time in the 24 hours prior to discharge/transfer. If you are already scoring gastrostomy at discharge, do not score gavage at discharge as well.

Incubator Score this if the patient is in an incubator or radiant warmer at any time in the 6 hours prior to discharge/transfer. Do not count incubator use for transport only.

Tracheostomy Score this if the patient has a tracheostomy in place at the time of discharge/transfer.

Gastrostomy Score this if the patient has a gastrostomy in place at the time of discharge/transfer.

RESPIRATORY SUPPORT

CPAP Score this if the patient is on CPAP (nasal, facial or endotrachial) at the time of discharge/transfer. Do not

score if the patient died while on CPAP.

IMV Score this if the patient is on mechanical support (intubated and being hand bagged or on mechanical ventilation) at the time of discharge/transfer. Do not score if the patient died while receiving mechanical support.

Other Score this if the patient is on another type of respiratory support (i.e. “bagging”) not listed here or in the “support at discharge” section at the time of discharge/transfer.

Days on ventilator

Total number of days during which the infant was on IPPV. If infant received IPPV during any part of a day, that day is counted as one day. (ventilation does NOT include CPAP, nasal cannula, O2 by mask, incubator O2, or O2 by funnel). Score all days (or partial days) including ventilation for the duration of a procedure and up to 24 hours after the procedure as a result of the procedure.

Days on CPAP Total number of days during which the infant received CPAP. If the infant receives more than one type of resp. support in a day (i.e. mechanical vent, cpap or O2 treatment) count that day only once under the highest form of ventilation received. For example, if the infant received both CPAP and O2 during a 24 hour period (from 00:00 to 23:59) count this day as 1 day on CPAP and 0 days on O2.

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Days on O2 Total number of days during which the infant received continuous O2, but not IPPV or CPAP. If the infant receives more than one type of resp. support in a day (i.e. mechanical vent, cpap or O2 treatment) count that day only once under the highest form of ventilation received. For example, if the infant received both CPAP and O2 during a 24 hour period (from 00:00 to 23:59) count this day as 1 day on CPAP and 0 days on O2. Do not score days on which oxygen was given for feeds only as this is not a form of continuous oxygen.

Autopsy Record whether autopsy consent was obtained. This information will be used to recall charts later to verify causes of death. If the patient did not die during this hospital visit score as “N/A”.

Cause of death Record the principle cause of death as stated by the attending physician or autopsy findings. Where there is a discrepancy, ask the physician to verify the cause of death. Use underlying diagnoses, NOT terminal events like “cardiac arrest."

POST-TRANSFER SCREEN DEFINITIONS

Complete this screen only for patients that are discharged to another level 2 or level 3 nursery from your NICU. If

patients are discharged home or to a level 1 nursery from your NICU leave this screen blank. Once a patient has been classified as being included under ‘post-transfer’ then you should continue to complete this screen for each time there is a transfer, until the patient is finally discharged home or to a level 1 nursery. If the information for certain items will never be available (e.g. the baby has been discharged from the next hospital and they do not have the oxygen information anymore), score these items as “unknown” or use the missing value where appropriate.

Destination from next hospital

Record destination on discharge from second hospital here. If second discharge is to another hospital or the baby died at the subsequent location score “other” and record the destination/death in the “if transferred/other, specify” box. If second discharge is unknown score as “unknown or N/A”.

Date of next discharge

Record the date of discharge from the subsequent location. If that discharge was to a destination other than home, record the next discharge information again in the box that pops up below.

If transferred/other, specify

If disposition is other than home, record destination from second hospital here. If the baby died at the next hospital, type DIED.

Last day on oxygen at hospital

If the infant was still on oxygen at the time of the primary discharge, attempt to ascertain from the receiving hospital what day supplemental oxygen was finally discontinued. If the baby did not receive O2 at the receiving hospital, leave blank. If the baby went home or to another hospital/nursery on O2 and last day on O2 is unknown, use the date of discharge.

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APPENDIX I CNN/EPIC DRUG CLASSIFICATION LIST

CNN medications include only those drugs classified as: antibiotics, paralytics, narcotics/sedatives, steroids, surfactant, and aminophylline (under respiratory stimuli). EPIC medications include all CNN medications and: bronchodilators, diuretics, and nitric oxide.

DRUG NAME CLASSIFICATION

ACYCLOVIR

ACETOMINOPHEN (Tylenol)

ACETAZOLAMIDE

ANTIBIOTIC

SEDATIVE

DIURETIC

ADENOSINE NOT SCORED (pressor)

ALBUTEROL

ALDACTAZIDE

ALDACTONE

ALLOPURINOL

AMICAR

AMIKACIN

AMOXICILLIN (same as Amoxil)

BRONCHODILATOR

DIURETIC

DIURETIC

NOT SCORED

NOT SCORED

ANTIBIOTIC

ANTIBIOTIC

AMPHOTEROCIN B ANTIBIOTIC

AMPICILLIN

AMRINONE

ANCEF

ANECTINE (same as Succynylcholine)

ANTIBIOTIC

NOT SCORED (pressor)

ANTIBIOTIC

PARALYTIC

ANESTHESIAS

ASPIRIN

NOT SCORED

NOT SCORED

ATIVAN (same as Lorazepam) NOT SCORED (anticonvulsant)

ATROPINE

ATROVENT

AZT (same as Retrovir and Zidovudine)

BACITRACIN

BACTIGRAS

BACTRIM (same as Septra)

BACTROBAN (same as Mupirocin)

NOT SCORED

BRONCHODILATOR

NOT SCORED (HIV medication)

NOT SCORED

NOT SCORED (topical dressing)

ANTIBIOTIC

NOT SCORED (topical antibiotic)

BECLOMETHASONE

BECLOFORTE

STEROID

STEROID

BECLOVENT PUFFS

BENADRYL (same as Diphenhydramine)

BETA CELESTONE

BETHAMETHASONE

STEROID

NOT SCORED

STEROID

STEROID

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BIAXIN (same as Clarithromycin)

BICARBONATE

BICITRA

ANTIBIOTIC

NOT SCORED (acidosis treatment)

NOT SCORED

BLES

BUDESONIDE

CAFFEINE

CA GLUCONATE (bolus or IV drip)

CALCIUM BOLUS

SURFACTANT

STEROID (inhaled)

AMINOPHYLLINE

NOT SCORED

NOT SCORED

CAPTOPRIL

CARNITINE

CEFAZOLIN

CEFIXIME

NOT SCORED (antihypertensive agent)

NOT SCORED

ANTIBIOTIC

ANTIBIOTIC

CEFOTAXIME (same as Claforan)

CEFOXITIN

CEFTAZIDIME

CEFTRIAXONE

CEFUROXIME

ANTIBIOTIC

ANTIBIOTIC

ANTIBIOTIC

ANTIBIOTIC

ANTIBIOTIC

CEPHALEXIN

CHLORAL HYDRATE

CHLORAMPHENICOL

CHLORPROMAXINE

CHOLORTHIAZIDE (CTZ)

ANTIBIOTIC

SEDATIVE

ANTIBIOTIC

NOT SCORED

DIURETIC

CIMETIDINE

CIPROFLOXACIN (CIPRO)

CISAPRIDE

CLAFORAN (same as Cefotaxime)

CLARITHROMYCIN (same as Biaxin)

CLINDAMYCIN

CLOXACILLIN

CODEINE

CORTISOL (CORTISONE)

CO-TRIMOXAZOLE (same as Septra)

CREON 8

CROMOLYN (same as Intal)

CTZ (CHLORTHIAZIDE)

CUROSURF

CYCLOPENTOLATE

D10W BOLUS

NOT SCORED (anti-ulcer medication)

ANTIBIOTIC

NOT SCORED

ANTIBIOTIC

ANTIBIOTIC

ANTIBIOTIC

ANTIBIOTIC

NARCOTIC

STEROID

ANTIBIOTIC

NOT SCORED

NOT SCORED (antihistamine)

DIURETIC

SURFACTANT

NOT SCORED

NOT SCORED

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DECADRON

DEXAMETHASONE

DIAMOX

DIAZEPAM (same as Valium)

DIAZOXIDE

STEROID

STEROID

DIURETIC

NOT SCORED (anticonvulsant)

NOT SCORED (antihypertensive agent)

DIGOXIN

DIHYDROCORTISONE

DILANTIN (same as Phenytoin)

DIPHENHYDRAMINE (same as Benadryl)

DITROPAN

DIURIL

NOT SCORED (anti-arrhythmia agent)

STEROID

NOT SCORED (anticonvulsant)

NOT SCORED

NOT SCORED

DIURETIC

DOBUTAMINE

DOMPERIDONE

DOPAMINE

DOXAPRAM

DPH (DIPHENYL HYDANTOIN)

DTO (DILUTE TINCTURE OF OPIUM)

EDECRIN

ENERGIX

NOT SCORED (pressor)

NOT SCORED (acid reflux med.)

NOT SCORED (pressor)

NOT SCORED

NOT SCORED (anticonvulsant)

NARCOTIC

DIURETIC

NOT SCORED

ENOXAPARIN

EPINEPHRINE (EPI DRIP)

NOT SCORED (anti-coagulant agent)

NOT SCORED (pressor)

ERYTHROMYCIN

ERYTHROMYCIN EYE OINTMENT

ETHACRYNIC ACID

EXOSURF

ANTIBIOTIC

NOT SCORED

DIURETIC

SURFACTANT

FENTANYL

FERRINSOL

FILGRASTIM

FLAGYL (same as Metronidazole)

FLAMAZINE

FLORANE

NARCOTIC

NOT SCORED

NOT SCORED

ANTIBIOTIC

NOT SCORED (topical antibiotic)

NOT SCORED

FLOVENT (same as flonase, fluticasone)

FLUCONAZOLE

FLUCYTOSINE

FOLIC ACID

FORANE (Anaesthetic)

STEROID (inhaled)

ANTIBIOTIC

ANTIBIOTIC

NOT SCORED

NOT SCORED

FUROSEMIDE DIURETIC

GANCYCLOVIR NOT SCORED (antiviral)

45

GARAMYCIN

GARAMYCIN OPHTHALMIC OINTMENT

GARASONE OPHTHALMIC OINTMENT

GENTAMYCIN

GENTAMYCIN EYE DROPS

GLUCAGON

GLYCERINE SUPPOSITORY

NOT SCORED (topical)

NOT SCORED (topical)

NOT SCORED (topical)

ANTIBIOTIC

NOT SCORED

NOT SCORED

NOT SCORED

HALOTHANE (Anaesthetic)

HCTZ (HYDROCHOLORTHIAZIDE)

NOT SCORED

DIURETIC

HEPARIN NOT SCORED

HEPATITIS VACCINE

HOMOTROPINE

NOT SCORED

NOT SCORED

HYDRALAZINE

HYDRODIURIL (same as hydrocholorothiazide)

NOT SCORED (pressor)

DIURETIC

HYDROCORTISONE

HYDROCORTISONE CREAM

HYDROCHOLORTHIAZIDE (HCTZ) (same as hydrodiuril)

IBUPROFEN

IMIPENEM

INDERAL (same as Propanolol)

STEROID

NOT SCORED

DIURETIC

NOT SCORED

ANTIBIOTIC

NOT SCORED (anti-arrhythmia agent)

INDOCIN (same as Indocid)

INFASURF

INDOMETHACIN (for PDA treatment-score on

D&P screen)

SURFACTANT

INTAL ( same as Cromolyn)

INSULIN

INSUFLON

IRON, ELEMENTAL

ISO (ISOFLUORINE) inhalation (Aneasthetic)

NOT SCORED (antihistamine)

NOT SCORED

NOT SCORED

NOT SCORED (given for anemia)

NOT SCORED

ISOFERAN

ISONIAZID

ISOPROTERENOL

ISUPREL

IV BICARBONATE (NEUT OR THAM)

KETOCONAZOLE

NOT SCORED

ANTIBIOTIC

BRONCHODILATOR

NOT SCORED (pressor)

NOT SCORED (acidosis treatment)

NOT SCORED (anti-fungal agent)

KEFLEX ANTIBIOTIC

KEFZOL ANTIBIOTIC

KETAMINE (Anesthetic)

L-ARGININE

NOT SCORED

NOT SCORED

46

LEBETALOL

LASIX

LIDOCAINE (Anesthetic)

LINEZOLID

LORAZEPAM (same as Ativan)

LUGOL’S SOLUTION (same as Potassium Iodine)

MAGNESIUM SULFATE

MANNITOL

MEROPENEM

MEPERIDINE

METHADONE

METICILLIN

METHYLPREDNISOLONE

METOLAZONE

METRONIDAZOLE (same as Flagyl)

MEZLOCILLIN

MIDAZOLAM (Anaesthetic)

MILRINONE

NOT SCORED (vasodilator)

DIURETIC

NOT SCORED

ANTIBIOTIC

NOT SCORED (anticonvulsant, but may be used as a

sedative in which case should be scored under meds.)

NOT SCORED

NOT SCORED (anticonvulsant)

DIURETIC

ANTIBIOTIC

NARCOTIC

NARCOTIC

ANTIBIOTIC

STEROID

DIURETIC

ANTIBIOTIC

ANTIBIOTIC

SEDATIVE

NOT SCORED (vasodilator)

MIVACURIUM

MOGADON (same as Nitrazepam)

PARALYTIC

NOT SCORED (anticonvulsant)

MORPHINE NARCOTIC

MORPHINE SULFATE (same as MSO4)

MUPIROCIN (same as Bactroban)

MYCOSTATIN (same as Nystatin)

NARCOTIC

NOT SCORED (topical antibiotic)

See Nystatin (oral vs. topical)

NAFCILLIN ANTIBIOTIC

NaHCO3 (same as Sodium Bicarb)

NARCAN (same as Naloxone)

NEOSTIGME

NEOSYNEPHRINE

NOT SCORED (acidosis treatment)

NOT SCORED

NOT SCORED

NOT SCORED

NETILMICIN

NEVIRAPINE

NIFEDIPINE

NIPRIDE

ANTIBIOTIC

NOT SCORED (HIV medication)

NOT SCORED (vasodilator)

NOT SCORED (pressor)

NITRAZEPAM (same as Mogadon)

NITRIC OXIDE GAS (Anaesthetic)

NITRIC OXIDE (iNO)

NITROGLYCERINE (NTG)

NOT SCORED (anticonvulsant)

NOT SCORED

NITRIC OXIDE (vasorelaxant)

NOT SCORED (pressor)

47

NITROPRUSSIDE

NYSTATIN ORAL SUSPENSION

NYSTATIN POWDER/OINTMENT/CREAM

OMEPRAZOLE

ONDANSETRONE (same as Zofron)

OPIUM SOLUTION

OPTIMYXIN EYE DROPS

OXACILLIN

PALIVIZUMAB

PANCURONIUM (PAVULON)

PARALDEHYDE (given rectally)

PAVULON

PENICILLIN G

PENTOBARBITAL

PHENOBARBITAL

NOT SCORED (pressor)

ANTIBIOTIC

NOT SCORED (topical antibiotic)

NOT SCORED (ulcer treatment)

NOT SCORED

NARCOTIC

NOT SCORED

ANTIBIOTIC

RSV IMMUNIZATION

PARALYTIC

NOT SCORED (anticonvulsant)

PARALYTIC

ANTIBIOTIC

SEDATIVE

NOT SCORED (anticonvulsant, but may be used as a

sedative in which case should be scored under meds.)

PIPERACILLIN

PHENOXYBENZAMINE

PHENTOLAMINE (same as Regitine)

PHENYLEPHRINE

PHENYLEPHRINE EYE DROPS

PHENYTOIN (same as Dilantin)

POLYSPORIN

POLYSPORIN OPTHALMIC OINTMENT

POLYTRIM EYE DROPS

POTASSIUM IODINE (same as Lugol’s Solution)

PREDFORTE

PREDNISOLONE

ANTIBIOTIC

NOT SCORED (vasodilator)

NOT SCORED

NOT SCORED (pressor)

NOT SCORED

NOT SCORED (anticonvulsant)

NOT SCORED (topical)

NOT SCORED

NOT SCORED

NOT SCORED

NOT SCORED

STEROID

PREDNISONE

PRESSORS

STEROID (post-natal only)

NOT SCORED

PRISCOLINE (same as Tolazoline)

PROCAINAMIDE

PROLASTIN

PROPAFENONE HCL

PROPANOLOL (same as Inderal)

PROPOFOL

PROPYLTHIOURACIL (PROPYL-THYRACIL)

PROSTAGLANDINS (PGE) IV (PROSTIN)

NOT SCORED (pressor)

NOT SCORED (anti-arrhythmia agent)

NOT SCORED

NOT SCORED (anti-arrhythmia agent)

NOT SCORED (anti-arrhythmia agent)

SEDATIVE

NOT SCORED

NOT SCORED (pressor)

48

PROVENTIL BRONCHODILATOR

PULMICORT

PULMOZYME AEROSOL

PYRID OXIME

PYRIMETHAMINE (oral)

STEROID

NOT SCORED

NOT SCORED

NOT SCORED

RACEMIC EPINEPHRINE (same as vaponefrin)

RANITIDINE (same as Zantac)

RECOMBIVAX

REGITINE (same as Phentolamine)

REGLAN

RETROVIR (same as Zidovudine and AZT)

RIFAMPIN

BRONCHODILATOR

NOT SCORED

NOT SCORED (hepatitis vaccine)

NOT SCORED

NOT SCORED

NOT SCORED (HIV medication)

ANTIBIOTIC

RIVOTRIL

ROCURONIUM BROMIDE (same as Zemuron)

NOT SCORED (anticonvulsant)

PARALYTIC

SALBUTAMOL

SANDOSTATIN

SEPTRA (same as Bactrim or Co-Trimoxazole)

SEROFLURANE (anaesthetic)

SILDENAFIL (same as Viagra)

SIMETHICONE

SOLUCORTEF

SOLUMEDROL

SPIRONOLACTONE

BRONCHODILATOR

NOT SCORED

ANTIBIOTIC

NOT SCORED

NOT SCORED

NOT SCORED (anti-flatulent agent)

STEROID

STEROID

DIURETIC

STREPTOMYCIN

SUCCYNYLCHOLINE (SUX)

ANTIBIOTIC

PARALYTIC

SUFENTA

SULFADIAZINE

SURVANTA

NARCOTIC

NOT SCORED (topical)

SURFACTANT

TEMPRA (same as acetaminophen)

THEOPHYLLINE

SEDATIVE

AMINOPHYLLINE

TOBRADEX EYE OINTMENT

TOBRAMYCIN

TOLAZOLINE (same as Priscoline)

TRIMETHOPRIM

TRI-VI-SOL

NOT SCORED

ANTIBIOTIC

NOT SCORED (pressor)

ANTIBIOTIC

NOT SCORED

TYLENOL (Acetaminophen) SEDATIVE

UROKINASE

URSODIOL

NOT SCORED

NOT SCORED

49

VALIUM (same as Diazepam)

VALPROIC ACID

NOT SCORED (anticonvulsant)

NOT SCORED (anticonvulsant)

VANCOMYCIN ANTIBIOTIC

VAPONEFRIN (same as Racemic Epinephrine)

VECURONIUM (VEC)

BRONCHODILATOR

PARALYTIC

VENTOLIN (inhalation) BRONCHODILATOR

VERSED (Anaesthetic)

VIGABATRIN

VIGILON

VITAMIN D

VITAMIN K

VZIG (Varicella Zoster Immuno-globulin)

XYLOCAINE

NOT SCORED

NOT SCORED (anticonvulsant)

NOT SCORED

NOT SCORED

NOT SCORED

NOT SCORED

NOT SCORED

ZANTAC (same as Ranitidine)

ZEMURON (same as Rocuronium Bromide)

ZIDOVUDINE (same as Retrovir and AZT)

ZINC GLUCONATE

ZOFRON (same as Ondansetrone)

NOT SCORED

PARALYTIC

NOT SCORED (HIV medication)

NOT SCORED

NOT SCORED

50

APPENDIX II CLASSIFICATION OF OPERATIONS –MAJOR OR MINOR-

Score all operations/procedures performed in the operating room and/or requiring anaesthesia. Major and minor operations are mutually exclusive and therefore should be scored separately, unless they occur together under the same anaesthetic episode, in which case only 1 major operation would be scored.

OPERATIONS Major

OPERATIONS Major

CRANIOTOMY

Craniotomy to drain subdural hematoma Hickman catheter, placement of Myelomeningocele, closure/re-section of Myeloschisis, closure of Occipital encephalocele, re-section of Reservoir or shunt CNS (IVH) Septum pellucidum fenestration for hydrocephalus Tethered cord, release of with operating microscope VP shunt insertion revision of a VP shunt

OTHER

Amputation, below the knee Eye surgery to re-attach cornea (involves banding) Posterior laryngeal cleft, repair of through a laryngeal fissure approach Right femoral artery, resection of w/ proximal thrombectomy & w/ a 4-compartment fasciotomy of lower leg Right forearm fasciotomy, both dorsal & volar compartments Subperiosteal release for mouth

OPERATIONS Minor

LAPAROTOMY

Abdominal omphalocele, repair of Aneurysm in right internal iliac artery, removal of Bladder rupture, closure of Bowel, re-section of correction of atresia Colostomy revision of prolapsing colostomy Corkscrew duodenum, release of Dermoid Cyst, removal of (laparo- or thora- depending on site) Diaphragmatic hernia repair (from under the diaphragm) Duodenojejunostomy Fundoplication Enterotomy (for removal of meconium) Epispadias repair Gastroschisis defect, closure of Ileostomy closure/reversal of ileostomy resection ileum & formation ileostomy/mucus-fistula closure of ileostomy & mucus fistula NEC Nephrectomy Omphalocele, closure or re-section of Omphalomesenteric duct fistula, repair of Orchidectomy Pyloromyotomy (for pyloric stenosis) Pyloroplasty Urinary ascites w/ bladder rupture, repair Vesicostomy, closure/revision of Volvulus correction

Angiogram Anoplasty Ballon dilations of the esophagus (also of pulm. valve)

THORACOTOMY

ASD closure BTS for tricuspid atresia Coarctation repair Cystic adenomatoid malformation, correction of Cystic hygroma Diaphragmatic hernia repair (from above the diaphragm) Esophageal atresia (laparo- or thoro- as per location) Lobectomy Lung biopsy (open chest) Pacemaker, insertion of (permanent) Pneumonectomy Pulmonary artery banding Pulmonary artery plasty (Blalock-Tassug shunt placed) Tracheoesophageal fistula (TEF), repair Vascular ring operation

Ballon Septostomy Bone marrow biopsy Bronchoscopy Catheters, surgically placed arterial (cardiac) catheterization CVL placement (in OR or w/anaesthesia) Elecath pacing catheter placement IVC catheter peritoneal drainage catheter Choanal atresia repair Circumcision Cryo/Laser treatment (for ROP) Cytoscopy Embolization Esophagoscopy Examination under anaesthesia (i.e.) Eye surgery to re-attach cornea (no banding)

51

OPERATIONS Minor (cont.)

OPERATIONS No Score

Ballon catheter in lung (with fentanyl & pavulon but not anaesthesia) Chest tube placement Cutdown venous access CVL removal (or any line, unless sent to OR specifically for removal) Extra digit removal 10 French thoracotomy tube placement G-Tube replacement (without anaesthesia) Lumbar puncture Pacemaker insertion via esophageal lead Peripheral arterial line (PAL) placement Skin biopsy Thora/paracentesis Tooth extraction under local anaesthetic Tracheostomy (only counts on Diagnosis/Procedures screen) UAL or UVL placement Ventricular drain insertion (with fentanyl but not general anaesthesia) Ventriculopuncture (through a previously implanted catheter)

Gastroscopy Gastrostomy G-tube insertion under general anaesthesia G-tube replacement (with general anaesthesia) Hepatic cyst drainage (in radiology under U/S guidance) Hernia repair Herniorrhaphy Hickman line, placement of (if to superior vena cava) Iridectomy Laryngoscopy Laryngo-bronchoscopy Lensectomy Lung biopsy (if by puncture) Myringotomy tubes Nephrostomy (tube placement) Nerve biopsy (under general anaesthesia) Orchiopexy Osteomyletis, drainage of left tibial Pacemaker insertion of (if put in intracardiac) PDA ligation/closure (even if a thoracotomy is required) PDA closed during cardiac catherization with a coil Penrose drain insertion for spontaneous intestinal perforation for NEC (with or without general anaesthesia) Rectal biopsy Right groin wound, debridement & repair of Scalp wound debridement (with formation of multiple flaps & skin grafts Silo placement for gastroschisis Skin grafting Stint Placement (even if only lidocaine applied) Tongue adhesion to palate, release of Tongue lip adhesion Tracheostomy (on Diagnosis/Procedures screen only) cricoid split Tracheotomy Ventricular taps, multiple frontal ventricular drain insertion (if w/ general anaesthesia) Vitrectomy

52

APPENDIX III CLASSIFICATION OF OTHER DIAGNOSIS LIST How to use this list: Search for a particular diagnosis according to its diagnosis category in the following list. The diagnosis categories are generally broad diagnosis (i.e. jaundice). Under the ‘diagnosis’ column find ‘jaundice’ and then look at the options in the ‘written as’ column to find the particular description that fits the given diagnosis (i.e. physiologic jaundice). If you are still unable to find a diagnosis contact the NCC for advice. DIAGNOSIS WRITTEN AS… Abrasion, superficial (due to delivery) Birth trauma Abruptio placentae Abnormalities of placenta Acidosis, fetal Fetal asphyxia affecting newborn Acidosis, neonatal Late metabolic acidosis of newborn Adipose tissue, disorder of Sclerema neonatorum Amino-acid disorder Other transitory neonatal endocrine and metabolic disturbances Amniotic fluid, high Polyhydramnios Amniotic fluid, low Oligohydramnios Anemia, ABO isoimmunization Hemolytic disease, jaundice or anemia due to ABO Anemia, congenital Congenital anemia Anemia, late isoimmunization Late anemia due to isoimmunization Anemia, other or unspecified cause Anemia due to other specified or unspecified causes Anemia, prematurity Anemia of prematurity Anemia, Rh isoimmunization Hemolytic disease, jaundice or anemia due to Rh

Anemia, unspecified blood incompatibility Hemolytic disease, jaundice or anemia due to other/unspecified blood-group incompatibility

Anoxia NOS in liveborn infant Birth asphyxia Anoxia, fetal Fetal asphyxia affecting newborn Antepartum hemorrhage (APH) Abnormalities of placenta Anuria not scored Apnea (of Prematurity) Apneic spells NOS originating in perinatal period Asphyxia, fetal Fetal asphyxia affecting newborn Asphyxia, mild/moderate or severe Birth asphyxia Atelectasis, Pulmonary collapse originating in the perinatal period Bilirubin encephalopathy Other fetal or neonatal jaundice BPD Bronchopulmonary dysplasia Breast, inflammation Breast engorgement in newborn Bruising Bruising in fetus/newborn Caput succedaneum Other hemorrhage of fetus or newborn Cardiorespiratory distress syndrome Pulmonary hypoperfusion syndrome Cerebral, abnormality/ irritability Cerebral depression, coma & other abnormal cerebral signs Cerebral, depression Cerebral depression, coma & other abnormal cerebral signs Cholestasis Other fetal or neonatal jaundice Chronic lung (respiratory) disease (CLD) Bronchopulmonary dysplasia Chylothorax Chylothorax originating in the perinatal period Coagulation defect, intravascular Disseminated intravascular coagulation in newborn Coagulation defect, transient Other transient neonatal disorders of coagulation Coagulopathy Other transient neonatal disorders of coagulation Collapsed lung Pulmonary collapse originating in the perinatal period Coma Cerebral depression, coma & other abnormal cerebral signs Cord around neck Conditions of umbilical cord Cyanotic attacks Apneic spells NOS originating in perinatal period Diabetes mellitus, neonatal Diabetes mellitus syndrome in newborn Digestive system, disorder Other specified perinatal disorders of digestive system Drugs, withdrawal Drug withdrawal syndrome in newborn Duchenne-Erb paralysis Birth trauma Ecchymoses Bruising in fetus/newborn Edema, neonatal Edema neonatorum Electrolyte disturbances Other transitory neonatal electrolyte disturbances Embolism not scored

53

Emphysema Interstitial emphysema and related conditions Endocrine, disturbance of function Other transitory neonatal endocrine and metabolic disturbances Erb’s palsy Birth trauma Erythroblastosis (due to Rh, ABO, or other) see hemolytic disease FAS Fetal alcohol syndrome Fecaliths Meconium ileus NOS Feeding problems/intolerance Feeding problems in newborn Fetal, blood loss Other hemorrhage of fetus or newborn Fever not scored Forceps, damage during extraction Fetus or newborn affected by forceps extraction Fracture, (from delivery) Birth trauma Gastroesophageal reflux Gastroesophageal reflux disease GERD Gastroesophageal reflux disease Growth retardation Fetal growth retardation, unspecified Heart rate/rhythm, abnormality Abnormality in fetal heart rate or rhythm Hematemesis Hematemesis and melena due to swallowed maternal blood Hemolytic disorder Other specified transient hematological disorders Hematoma see hemorrhage Hemolysis see hemolytic disease Hemolytic disease, ABO isoimmunization Hemolytic disease, jaundice or anemia due to ABO

Hemolytic disease, other Hemolytic disease, jaundice or anemia due to other/unspecified blood-group incompatibility

Hemolytic disease, Rh isoimmunization Hemolytic disease, jaundice or anemia due to Rh Hemorrhage, adrenal Adrenal hemorrhage Hemorrhage, cerebral Subdural and cerebral hemorrhage Hemorrhage, cutaneous Bruising in fetus/newborn Hemorrhage, diathesis Hemorrhagic disease/diathesis of newborn Hemorrhage, epicranial Massive epicranial subaponeurotic hemorrhage Hemorrhage, gastrointestinal Gastrointestinal hemorrhage Hemorrhage, intraventricular Intraventricular hemorrhage, first noted after 2 weeks of life Hemorrhage, other Other hemorrhage of fetus or newborn Hemorrhage, pulmonary Pulmonary hemorrhage Hemorrhage, subarachnoid Subarachnoid hemorrhage Hemorrhage, subdural Subdural and cerebral hemorrhage Hemorrhage, superficial Bruising in fetus/newborn Hemorrhage, umbilical Umbilical hemorrhage after birth Hepatitis Other fetal or neonatal jaundice Hernia, inguinal (bilateral) Congenital hydrocele Hydrocele Congenital hydrocele Hydrops fetalis, isoimmunization Hydrops fetalis due to isoimmunization Hydrops fetalis, other or unknown cause Hydrops fetalis, idiopathic Hyperbilrubinemia see jaundice Hypercapnia Fetal asphyxia affecting newborn Hyperglycemia Neonatal hyperglycemia Hyperinsulinism Neonatal hypoglycemia Hyperkalemia Other transitory neonatal electrolyte disturbances Hypernatraemia Other transitory neonatal electrolyte disturbances Hyperthermia not scored Hyperthyrodism Neonatal hyperthyrodism (transient) Hypocalcemia Hypocalcemia and hypomagnesemia of newborn Hypoglycemia Neonatal hypoglycemia Hypomagnesemia Hypocalcemia and hypomagnesemia of newborn Hyponatraemia Other transitory neonatal electrolyte disturbances Hypoparathyroidism Neonatal hypoparathyroidism Hypothermia, other not scored Hypothermia, severe Cold injury syndrome of newborn Hypoxia NOS in liveborn infant Birth asphyxia Hypoxia, fetal Fetal asphyxia affecting newborn

54

Ileus see intestinal obstruction Infarction, in liveborn infant Birth asphyxia Inguinal hernia Congenital hydrocele Injury, bone fracture (from delivery) Birth trauma Injury, due to forceps Fetus or newborn affected by forceps extraction Injury, laceration/tear (from delivery) Birth trauma Injury, rupture of an organ (from delivery) Birth trauma Injury, spine/spinal cord (from delivery) Birth trauma Injury, to eye (from delivery) Birth trauma Inspissated bile syndrome Other fetal or neonatal jaundice Integument, other conditions Other specified conditions involving integument of fetus & newborn Interstitial pulmonary fibrosis Bronchopulmonary dysplasia Intestinal obstruction, due to meconium Meconium ileus NOS Intestinal obstruction, inspissated milk Intestinal obstruction due tio inspissated milk Intestinal obstruction, unspecified Transitory ileus of newborn Intestinal perforation Intestinal perforation, perinatal Intrauterine growth retardation (IUGR) Fetal growth retardation, unspecified Ischemia NOS in liveborn infant Birth asphyxia Ischemia, fetal Fetal asphyxia affecting newborn Isoimmunization, blood group See hemolytic disease Isoimmunization, kernicterus Kernicterus due to isoimmunization Jaundice, ABO isoimmunization Hemolytic disease, jaundice or anemia due to ABO Jaundice, of Prematurity Other fetal or neonatal jaundice Jaundice, other (all) Other fetal or neonatal jaundice Jaundice, Rh isoimmunization Hemolytic disease, jaundice or anemia due to Rh

Jaundice, unspecified blood incompatibility Hemolytic disease, jaundice or anemia due to other/unspecified blood-group incompatibility

Kernicterus, isoimmunization Kernicterus due to isoimmunization Kernicterus, other Other fetal or neonatal jaundice Lung, collapsed Pulmonary collapse originating in the perinatal period Malnutrition, fetal Fetal growth retardation, unspecified Marginal sinus, rupture Abnormalities of placenta Maternal, blood loss Abnormalities of placenta Maternal, death Not Scored Maternal, diseases Not Scored Maternal, infections Not Scored Maternal, other conditions Not Scored Meconium aspiration Meconium aspiration syndrome Meconium plug syndrome Meconium ileus NOS Meconium, late passage Delayed passage of meconium Meconium, obstruction Meconium ileus NOS Meconium, peritonitis Meconium peritonitis Melena Hematemesis and melena due to swallowed maternal blood Metabolic academia, fetal Birth asphyxia Metabolic acidosis Late metabolic acidosis of newborn Metabolic disorder, amino-acids Other transitory neonatal endocrine and metabolic disturbances Metabolic, disturbance of function Other transitory neonatal endocrine and metabolic disturbances Myasthenia gravis Neonatal myasthenia gravis Neutropenia, isoimmune Neonatal neutropenia Neutropenia, maternal transfer Neonatal neutropenia Neutropenia, transient Neonatal neutropenia Oliguria not scored Paralysis, nerve (from delivery) Birth trauma Pericardial effusion Edema neonatorum Peritonitis, due to meconium Meconium peritonitis Petechiae Bruising in fetus/newborn Placenta abruptio Abnormalities of placenta Placenta previa Abnormalities of placenta

55

Placenta transfusion syndromes Abnormalities of placenta Placenta, damage to from amniocentesis/ Cesarean or medical induction Abnormalities of placenta Placenta, ectopic Abnormalities of placenta Placenta, hemorrhage Abnormalities of placenta Placenta, other abnomalities Abnormalities of placenta Placenta, premature separation Abnormalities of placenta Placentitis Abnormalities of placenta Plethora of newborn Polycythemia neonatorum Pleural effusion Edema neonatorum Pneumomediastinum Interstitial emphysema and related conditions Pneumopericardium Interstitial emphysema and related conditions Polycythemia Polycythemia neonatorum Prolapsed cord Conditions of umbilical cord Pulmonary interstitial emphysema (PIE) Interstitial emphysema and related conditions Pulmonary edema Edema neonatorum Pulmonary hypertension (PPHN) Persistent Pulmonary Hypertension of the newborn Rupture, of organ (from delivery) Birth trauma Supraventricular tachycardia (SVT) Abnormality in fetal heart rate or rhythm Tachycardia Abnormality in fetal heart rate or rhythm Tachypnea, ideopathic Transient tachypnea of newborn Tentorial bleed Other hemorrhage of fetus or newborn Thrombocytopenia, alloimmune Neonatal thrombocytopenia Thrombocytopenia, transient Neonatal thrombocytopenia Thrombosis not scored Throtoxicosis Neonatal hyperthyrodism (transient) Traumatic glaucoma Birth trauma TTN Transient tachypnea of newborn Twin-to-twin transfusion syndrome Abnormalities of placenta Umbilical cord, compressed Conditions of umbilical cord Umbilical cord, entangled Conditions of umbilical cord Umbilical cord, other conditions Conditions of umbilical cord Umbilical cord, short Conditions of umbilical cord Umbilical cord, thrombosis Conditions of umbilical cord Umbilical cord, varices of Conditions of umbilical cord Umbilical cord, velamentous insertion of Conditions of umbilical cord Umbilical inflammation Omphalitis of the newborn Umbilical ligature, slipped Umbilical hemorrhage after birth Unconjugated bilirubinaemia Other fetal or neonatal jaundice Uticaria neonatorum Other specified conditions involving integument of fetus & newborn Vasa previa Conditions of umbilical cord Vitamin K, deficiency Hemorrhagic disease/diathesis of newborn Wet lung syndrome Transient tachypnea of newborn Wilson-Mikity syndrome Bronchopulmonary dysplasia Bleeding see hemorrhage Inflammation, placenta Abnormalities of placenta Inflammation, liver Other fetal or neonatal jaundice Pulmonary, hypoperfusion Pulmonary hypoperfusion syndrome Inflammation, umbilical Omphalitis of the newborn Pyrexia not scored

56

APPENDIX IV CLASSIFICATION OF CONGENITAL ANOMALIES How to use this list: 1) Start by looking in the database list for the anomaly listed according to the description by the physician (ie. spina bifida). if nothing in the list matches then, 2) search the list following under the category (ie. nervous system-spina bifida). If you are still unable to find the anomaly contact the NCC for advice. Also, please note that before you score “other anomalies of…” be certain that the anomaly you are referring to can not be elsewhere classified (NEC in the following lists means “not elsewhere classifiable” ).

CATEGORY ICD-9 TEXT Chromosomal Autosomal translocation, balanced Balanced autosomal translocation in normal individual Chromosome anomaly, specified Other conditions due to chromosome anomalies Chromosome anomaly, unspecifed Conditions due to anomaly of unspecified chromosome Mongolism Down’s syndrome Trisomy 13 Patau’s syndrome Trisomy 18 Edward’s syndrome Trisomy 21 or 22 Down’s syndrome Syndromes, other see syndromes (under Other) XO syndrome Turner’s syndrome XXY syndrome Klinefelter’s syndrome Digestive System Mouth Cheilopalatoschisis Cleft palate with cleft lip Cheiloschisis Cleft lip Cleft lip & cleft palate Cleft palate with cleft lip Jaw, anomalies of Other anomalies of mouth Labium leporinum Cleft lip Lip pits Congenital fistula of lip Lip, fissure Cleft lip Lip, fistula of Congenital fistula of lip Lip, harelip Cleft lip Lip, large/overgrown Macrocheilia Lip, small Microcheilia Mouth, large Macrostomia Mouth, other anomalies Other anomalies of mouth Mouth, small Microstomia Pharynx, diverticulum of Diverticulum of pharynx Pharynx, imperforate Imperforate pharynx Pharynx, narrowing Imperforate pharynx Pharynx, other anomalies Other specified anomalies of pharynx Pharynx, pouch Pharyngeal pouch Salivary duct, closure of Imperforate salivary duct Salivary gland, accessory Accessory salivary gland Salivary gland, fistula of Congenital fistula of salivary gland Salivary gland, missing Absence of salivary gland Salivary gland, narrowing Atresia of salivary gland Tongue, accessory Double tongue Tongue, adhesions of Congenital adhesions of tongue Tongue, bifid Bifid tongue Tongue, fissure of Fissure of tongue Tongue, fusion partial or complete Ankyloglossia Tongue, incomplete development Hypoplasia of tongue

Tongue, large/overgrown Congenital hypertrophy of tongue Tongue, missing Aglossia Tongue, other anomalies Other anomalies of tongue Tongue, small/under-grown Hypoplasia of tongue Uvula, missing Absence of uvula

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Alimentary Tract Alimentary tract, missing Absence (complete) (partial) of alimentary tract NOS Alimentary tract, other anomaly of upper Other specified anomalies of upper alimentary tract Alimentary tract, unspecified anomaly of upper Unspecified anomaly of upper alimentary tract Anal canal, narrowing Atresia & stenosis of large intestine/rectum & anal canal Anus, ectopic Ectopic anus Anus, imperforate Atresia & stenosis of large intestine/rectum & anal canal Appendix, large Megaloappendix Bile ducts, narrowing Biliary atresia Bile ducts, other anomalies Other anomalies of gallbladder, bile ducts, and liver Cecum, ectopic Malrotation of cecum or colon Cloaca, persistent Persistent cloaca Colon, abnormal length Dolichocolon Colon, dilation of Congenital dilation of colon Colon, diverticulum of Congenital diverticulum of colon Colon, ectopic Malrotation of cecum or colon Colon, large Megacolon Colon, other functional disorders Hirschsprung's disease and other disorders of colon Colon, small Microcolon Digestive organs, accessory Duplication of digestive organs NOS Digestive organs, ectopic Malposition, congenital of digestive organs NOS Digestive system, other anomalies Other anomalies of digestive system Duodenal atresia Atresia and stenosis of small intestine Duodenum, large Megaloduodenum Esophageal achalasia Cardiospasm Esophagus, accessory Duplication of esophagus Esophagus, dilation of Dilatation, congenital, of esophagus Esophagus, diverticulum of Diverticulum of esophagus Esophagus, ectopic Displacement, congenital, of esophagus Esophagus, giant Giant esophagus Esophagus, imperforate Atresia or stenosis of esophagus Esophagus, missing Absent esophagus Esophagus, narrowing/stricture Atresia or stenosis of esophagus Esophagus, other anomalies Other anomalies of esophagus Esophagus, pouch of Esophageal pouch Esophagus, webbed Webbed esophagus Gallbladder, intrahepatic Intrahepatic gallbladder Gallbladder, other anomalies Other anomalies of gallbladder, bile ducts, and liver Gallbladder, unspecified anomaly Unspecified anomaly of gallbladder, bile ducts, and liver Hepatomegaly Other anomalies of gallbladder, bile ducts, and liver Hernia, hiatus Congenital hiatus hernia Intestine, fixation anomalies Other anomalies of intestinal fixation Intestine, malrotation Other anomalies of intestine Intestine, other anomalies Other anomalies of intestine Jejunum, imperforate Atresia and stenosis of small intestine Large intestine, narrowing Atresia & stenosis of large intestine/rectum & anal canal Liver, cystic disease Congenital cystic disease of liver Liver, fibrocystic disease Fibrocystic disease of liver Liver, large/overgrown Other anomalies of gallbladder, bile ducts, and liver Liver, other anomalies Other anomalies of gallbladder, bile ducts, and liver Liver, polycystic disease Congenital cystic disease of liver Pancreas, accessory Accessory pancreas Pancreas, annular Annular pancreas Pancreas, ectopic Pancreatic heterotopia Pancreas, incomplete development Agenesis or hypoplasia of pancreas Pancreas, missing Absence of pancreas Pylorus, narrowing Congenital pyloric stenosis Rectum, narrowing Atresia & stenosis of large intestine/rectum & anal canal

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Small intestine, narrowing Atresia and stenosis of small intestine Stomach, accessory Duplication of stomach Stomach, diverticulum of Diverticulum of stomach, congenital Stomach, ectopic Transposition of stomach Stomach, hourglass Hourglass stomach Stomach, large Megalogastria Stomach, other anomalies Other anomalies of stomach Stomach, small Microgastria Urogenital sinus Persistent Cloaca Volvulus Other anomalies of intestine Windsock deformity Atresia and stenosis of small intestine Genital/Reproductive System General Genital organs, other anomalies Other anomalies of genital organs Gonad, dysgenesis Gonadal dysgenesis Pseudohermaphroditism, indeterminate sex Indeterminate sex and pseudohermaphroditism Pseudohermaphroditism, sex determinable Pseudohermaphroditism (male) (female) Male Chordee Congenital chordee Cryptorchism Undescended and retractile testicle Epispadias Hypospadias or epispadias Hernia, inguinal bilateral (In other diagnosis list under 'Congenital hydrocele') Hydrocele (In other diagnosis list under 'Congenital hydrocele') Hypospadias Hypospadias or epispadias Penis, hidden Hidden penis Penis, other anomalies Other penile anomalies Penis, small Micropenis Testes, accessory Polyorchism Testes, fusion of Monorchism Testes, incomplete development Hypoplasia of testis Testes, missing both Anorchism Testes, missing one Monorchism Testes, undescended Undescended and retractile testicle Female Broad ligament, accessory Accessory fallopian tube or broad ligament Broad ligament, congenital cyst Embryonic cyst of fallopian tubes and broad ligaments Broad ligament, missing Absence of fallopian tube or broad ligament Broad ligament, narrowing Atresia of fallopian tube or broad ligament Broad ligament, other anomalies Other anomalies of fallopian tubes and broad ligaments Cervix, other anomalies Other anomalies of cervix, vagina & external genitalia External genitalia, other anomalies Other anomalies of cervix, vagina & external genitalia Fallopian tube, accessory Accessory fallopian tube or broad ligament Fallopian tube, congenital cyst Embryonic cyst of fallopian tubes and broad ligaments Fallopian tube, missing Absence of fallopian tube or broad ligament Fallopian tube, narrowing Atresia of fallopian tube or broad ligament Fallopian tube, only one functional Uterus with only one functioning horn Fallopian tube, other anomalies Other anomalies of fallopian tubes and broad ligaments Ovaries, other anomalies Other anomalies of ovaries Ovary, accessory Accessory ovary Ovary, dysgenesis Gonadal dysgenesis Ovary, ectopic Ectopic ovary Ovary, missing Absence or aplasia of ovary Ovary, streak Absence or aplasia of ovary Uterus, accessory Doubling of uterus Uterus, bicornuate Bicornuate uterus Uterus, didelphic Doubling of uterus Uterus, incomplete development Agenesis of uterus

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Uterus, missing Absence or aplasia of uterus Uterus, unicornis Uterus unicornis Vagina, other anomalies Other anomalies of cervix, vagina & external genitalia Ear, Face & Neck Ear Auditory canal, missing Absence of auditory canal (external) Auditory canal, narrowing/stricture Atresia or stricture of auditory canal (external) Auricle, accessory Accessory auricle Auricle, accessory on neck Cervical auricle Auricle, fistula of Fistula of auricle, congenital Auricle, large/overgrown Macrotia Auricle, missing Absence of auricle (ear) Auricle, prominence of Prominence of auricle Auricle, small/under-grown Microtia Auricular tubercle Darwin’s tubercle Ear & neck, fistula of Fistula of cervicoaural Ear lobe, missing Absence of ear lobe, congenital Ear, other anomalies Other anomaly of ear Eustachian tube, missing Absence of Eustachian tube Eustachian tube, other anomalies Other anomalies of Eustachian tube Hearing Impairment Anomalies of ear causing impairment of hearing Inner ear, membranous labyrinth Abnormality of membranous labyrinth Inner ear, Organ of Corti Abnormality of Organ of Corti Inner ear, other anomalies Other anomalies of inner ear Middle ear, bone anomalies Anomalies of ear ossicles Middle ear, bone fusion Fusion of ear ossicles Middle ear, other anomalies Anomaly of middle ear, except ossicles Osseous meatus, narrowing Atresia or stricture of osseous meatus (ear) Outer ear see ‘auricle’ Polyotia Accessory auricle Preauricular appendage Accessory auricle Preauricular cyst Preauricular cyst Preauricular fistula Preauricular sinus or fistula Tragus, accessory Accessory tragus Face Choanal atresia Atresia or stenosis of nares (anterior) (posterior) Dysmorphic features Other anomalies of face and neck Face, asymmetric Asymmetry of face Face, other anomalies Other anomalies of face and neck Nares, narrowing Atresia or stenosis of nares (anterior) (posterior) Nose, accessory Accessory nose Nose, bent/squashed Squashed or bent nose, congenital Nose, cleft Cleft nose Nose, deformity Deformity of nose Nose, missing Absent nose Nose, other anomalies Other anomalies of nose Neck Neck, other anomalies Other anomalies of face and neck Pterygium colli Webbing of neck Eye Ablepharon Absence of eyelid Anophthalmos Absence of eye

Anterior chamber, anomalies Other anomalies of anterior chamber/chamber angle & related structures

Anterior segment, multiple anomalies Multiple and combined anomalies of anterior segment Anterior segment, other anomalies Coloboma and other anomalies of anterior segment

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Aphakia Congenital absence of lens

Cataract, specified

Capsular and subcapsular cataract Cortical and zonular cataract Nuclear cataract Total and subtotal cataract, congenital

Cataract, unspecified Congenital cataract, unspecified Choroid and retina, degeneration Chorioretinal degeneration, congenital Cilia, missing or incomplete development Absence, agenesis, of cilia Ciliary body, other anomalies Other specified anomalies of iris and ciliary body Coloboma, anterior segment Coloboma and other anomalies of anterior segment Coloboma, fundus Fundus coloboma Coloboma, iris Coloboma of iris Coloboma, optic disc Coloboma of optic disc (congenital) Cornea, opacities Corneal opacities, interfering with vision, congenital Cornea, opacities Other corneal opacities, congenital Cornea, other anomalies in shape/size Anomalies of corneal size and shape Cornea, small Microcornea Cryptophthalmos Absence of eyelid Eye muscles, accessory Accessory eye muscles Eye muscles, accessory Accessory eye muscles Eye, abnormal development Dysplasia of eye Eye, incomplete development Agenesis or hypoplasia of eye Eye, missing Absence of eye Eye, other anomalies Other specified anomalies of eye Eye, rudimentary Agenesis or hypoplasia of eye Eye, unspecified anomaly Unspecified anomaly of eye Eyeball, cystic Cystic eyeball, congenital

Eyeball, large/overgrown

Simple buphthalmos Buphthalmos, unspecified Buphthalmos associated with other ocular anomalies (ie. keratoglobus, megalocornea, etc.)

Eyeball, small/under-grown

Simple microphthalmos Microphthalmos, unspecified Microphthalmos associated with other anomalies of eye and adnexa

Eyelid, accessory Accessory eyelid Eyelid, drooping Congenital ptosis Eyelid, missing Absence of eyelid Eyelid, other anomalies Congenital deformities of eyelids Iris, coloboma Coloboma of iris Iris, missing Aniridia Iris, other anomalies Other specified anomalies of iris and ciliary body Lacrimal gland, anomalies Specified congenital anomalies of lacrimal gland Lacrimal passages, anomalies Specified congenital anomalies of lacrimal passages Lacrimal passages, missing/under-dev. Absence or agenesis of part of lacrimal passages Lens, anomalies in shape/size Anomalies of lens shape or size Lens, ectopic Congenital ectopic lens Lens, missing Congenital absence of lens Lens, small Spherophakia Macular changes Congenital macular changes Microphakia Anomalies of lens shape or size Optic disc, anomalies Specified anomalies of optic disc Orbit, anomalies Specified congenital anomalies of orbit Posterior segment, cysts/folds Congenital folds and cysts of posterior segment Posterior segment, other anomalies Congenital anomalies of posterior segment Pupil, ectopic Corectopia Pupil, narrowing Atresia of pupil Pupils, unequal size Anisocoria, congenital

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Retina and choroid, degeneration Chorioretinal degeneration, congenital Retina, aneurysm Congenital retinal aneurysm Retina, changes Other retinal changes, congenital Sclera, anomalies Specified anomalies of sclera Spherophakia Anomalies of lens shape or size Syndromes, of the eye see syndromes (under Other) Vascular, anomalies of Vascular anomalies Vitreous opacity Congenital vitreous opacity Vitreous, other anomalies Vitreous anomalies Heart/Circulatory System Heart (& Lung Circulation) Abdominal heart Malposition of heart Aneurysm, aorta Aneurysm of aorta Aneurysm, cerebral arteriovenous Cerebral arteriovenous aneurysm, congenital Aneurysm, peripheral vascular system Congenital aneurysm (peripheral) Aneurysm, pulmonary arteriovenous Pulmonary arteriovenous aneurysm Aneurysm, sinus of Valsalva Aneurysm of sinus of Valsalva Aneurysm, specified site Aneurysm, cong., specified site not elsewhere classified Aorta & pulmonary artery, abnormal communication Communication (abnormal) between aorta & pul. artery Aorta & pulmonary artery, missing septum Aortic septal defect Aorta, aneurysm Aneurysm of aorta Aorta, coarctation Coarctation of aorta (preductal) (postductal) Aorta, dextratransposition Dextratransposition of aorta Aorta, dilation of Dilation of aorta Aorta, ectopic Abnormal position or origin of aorta Aorta, incomplete development Hypoplasia of aorta Aorta, missing Absence or aplasia of aorta Aorta, narrowing/stricture Atresia and stenosis of aorta Aorta, other anomalies Other anomaly of aorta Aortic arch, accessory Double aortic arch Aortic arch, convolutions Persistent convolutions, aortic arch Aortic arch, incomplete development Hypoplasia of aortic arch Aortic arch, interrupted Interruption of aortic arch Aortic arch, other anomalies Other anomalies of aortic arch Aortic arch, right, persistent Persistent right aortic arch Aortic valve orifice, incomplete development Atresia, or marked hypoplasia, of aortic orifice or valve Aortic valve orifice, narrowing Atresia, or marked hypoplasia, of aortic orifice or valve Aortic valve, bicuspid Bicuspid aortic valve Aortic valve, narrowing Congenital stenosis of aortic valve Aortic valve, other anomalies Congenital abnormality of aortic valve Artery, missing Absence of artery or vein, (not elsewhere classified) Artery, narrowing/stricture Atresia of artery or vein, (not elsewhere classified) Artery, other anomalies Anomaly of artery or vein, (not elsewhere classified) ASD see atrial septal defect Atrial septal defect, ostium primum Ostium primum defect Atrial septal defect, ostium secundum Ostium secundum type atrial septal defect Atrial septal defect, unspecified type Atrial septal defect Atrial septum & intraventricular septum, missing Cor biolculare Atrial septum, missing Absence of atrial septum Atrial ventricular communication Left ventricular-right atrial communication Atrioventricular block Complete or incomplete atrioventricular [AV] block Atrium secundum, defect Defect of atrium secundum Atrium, abnormal division into 2 chambers Cor triatriatum Cardiac vein, incomplete development Hypoplasia of cardiac vein Cardiac vein, narrowing Atresia of cardiac vein Cardiomyopathy Other anomaly of heart

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Common aortopulmonary trunk Persistent truncus arteriosus Common atrioventricular canal Absence of atrial septum Common atrium Absence of atrial septum Common truncus Persistent truncus arteriosus Common ventricle Cor triloculare biatriatum Congestive heart failure (CHF) Other anomaly of heart Coronary artery, abnormal communication Anomalous origin or communication of coronary artery Coronary artery, anomalous origin Anomalous origin or communication of coronary artery Coronary artery, haemangioma Arteriovenous malformation of coronary artery Coronary artery, other anomalies Coronary artery anomaly Dextraposition of aorta Abnormal position or origin of aorta Dextrocardia Malposition of heart Ductus arteriosus, recurring Persistent ductus arteriosus Ectopia cordis Malposition of heart Electrical impulse of heart, disturbance of Complete or incomplete atrioventricular [AV] block Foramen ovale, defect Defect of foramen ovale Foramen ovale, patent Defect of foramen ovale Fossa ovalis, defect Defect of fossa ovalis Great veins, other anomalies Other anomalies of great veins Great vessels, anomalous origin Origin of both great vessels from right ventricle Great vessels, transposition Complete transposition of great vessels Great vessels, transposition (corrected) Corrected transposition of great vessels Great vessels, transposition (incomplete) Incomplete transposition of great vessels Haemangioma of coronary artery Arteriovenous malformation of coronary artery Heart block Congenital heart block Heart, ectopic Malposition of heart Heart, large Cardiomegaly Heart, obstructive anomalies Obstructive anomalies of heart, NEC Heart, other anomalies Other anomaly of heart Intraventricular septal defect Ventricular septal defect Intraventricular septum & atrial septum, missing Cor biolculare Intraventricular septum, missing Cor triloculare biatriatum Left heart syndrome Hypoplastic left heart syndrome Levocardia (isolated) Malposition of heart Mesocardia Malposition of heart Mitral valve, accessory cusps Supernumerary cusps of mitral valve Mitral valve, fused commissure Fused commissure of mitral valve Mitral valve, narrowing Congenital mitral stenosis Mitral valve, other anomalies Congenital mitral insufficiency Mitral valve, parachute deformity Parachute deformity of mitral valve Ostium primum, defect Ostium primum defect Ostium primum, persistent Persistent ostium primum Ostium secundum, defect Defect of ostium secundum Overriding aorta Abnormal position or origin of aorta Patent Foramen Ovale Defect of foramen ovale Pericardium, defect of Pericardial defect PFO see patent foramen ovale Pulmonary artery, coarctation Atresia or stenosis of pulmonary artery Pulmonary artery, incomplete development Agenesis or hypoplasia of pulmonary artery Pulmonary artery, narrowing Atresia or stenosis of pulmonary artery Pulmonary artery, other anomalies Other anomalies of pulmonary artery Pulmonary infundibular stenosis Infundibular pulmonic stenosis Pulmonary subvalvular stenosis Subvalvular pulmonic stenosis Pulmonary valve, missing Congenital absence of pulmonary valve Pulmonary valve, narrowing Atresia or stenosis of pulmonary valve Pulmonary valve, other anomaly Other anomalies of pulmonary valve Pulmonary veins, transposition Persistent Transposition of pulmonary veins NOS

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Pulmonary venous connection, complete anomaly Total anomalous pulmonary venous connection Pulmonary venous connection, partial anomaly Partial anomalous pulmonary venous connection Pulmonary venous return, complete anomaly Total anomalous pulmonary venous return Pulmonary venous return, partial anomaly Partial anomalous pulmonary venous return Septum, closure defect Unspecified defect of septal closure Subaortic, narrowing Subaortic stenosis Supraaortic, narrowing Supra (valvular)-aortic stenosis Syndromes, of the heart & circulatory system see syndromes (under Other) TAPVC Total anomalous pulmonary venous connection TAPVR, subdiagphragmatic or supradiaphragmatic Total anomalous pulmonary venous return Tricuspid valve, ectopic Epstein’s anomaly Tricuspid valve, missing Absence of tricuspid valve Tricuspid valve, narrowing Tricuspid atresia and stenosis, congenital Truncus arteriosus, persistent Persistent truncus arteriosus Ventricle, accessory outlet Double outlet right ventricle Ventricle, diverticulum of Diverticulum, left ventricle Ventricle, single/common Cor triloculare biatriatum Ventricular atrial communication Left ventricular-right atrial communication Ventricular septal defect, AV canal type Atrioventricular canal type ventricular septal defect Ventricular septal defect, w/ pulmonary narrowing Ventricular septal defect w/ pulmonary stenosis/atresia Ventricular septum see intraventricular septum VSD Ventricular septal defect Peripheral Vascular System Aneurysm, peripheral Congenital aneurysm (peripheral) Brain, haemangioma Arteriovenous malformation of brain Cardinal vein, persistent Persistent left posterior cardinal vein Cerebral vessels, other anomalies Other anomalies of cerebrovascular system Cerebrovascular system, anomalies Anomalies of cerebrovascular system Circulatory system, unspecified anomaly Unspecified anomaly of circulatory system Gastrointestinal vessels, other anomalies Gastrointestinal vessel anomaly Haemangioma, brain Arteriovenous malformation of brain Haemangioma, peripheral system Arteriovenous malformation of periph. vascular system Haemangioma, spinal vessel Arteriovenous malformation of spinal vessel Limb vessels, other anomalies of lower Lower limb vessel anomaly Limb vessels, other anomalies of upper Upper limb vessel anomaly Peripheral vascular system, haemangioma Arteriovenous malformation of periph. vascular system Peripheral vascular system, other anomalies Other anomalies of peripheral vascular system Phlebectasia Congenital varix Renal arteries, accessory Multiple renal arteries Renal vessels, other anomalies Renal vessel anomaly Single umbilical artery Absence or hypoplasia of umbilical artery Spinal vessel, haemangioma Arteriovenous malformation of spinal vessel Spinal vessel, other anomalies Spinal vessel anomaly Subclavian artery, anomalous origin Anomalous origin, right subclavian artery Two vessel cord Absence or hypoplasia of umbilical artery Umbilical artery, missing/incomplete development Absence or hypoplasia of umbilical artery Varix Congenital varix Vein, missing Absence of artery or vein, (not elsewhere classified) Vein, narrowing Atresia of artery or vein, (not elsewhere classified) Vein, other anomalies Anomaly of artery or vein, (not elsewhere classified) Veins, vasodilation Congenital varix Vena cava, missing Absence of vena cava (inferior) (superior) Vena cava, narrowing Congenital stenosis of vena cava (inferior) (superior) Vena cava, persistent Persistent left superior vena cava

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Musculoskeletal System General

Birth-mark

Birthmarks Port-wine stain Strawberry nevus

Bone, defective formation Osteodystrophies Cartilage, abnormal development Chondrodystrophy Cartilage, benign growth Enchondromatosis Connective tissue, other anomalies Other anomal. of muscle/tendon/fascia/connective tissue Dyschondroplasia Enchondromatosis Eagle-Barrett syndrome Prune belly syndrome Ectoderm, abnormal development Congenital ectodermal dysplasia Fascia, other anomalies Other anomal. of muscle/tendon/fascia/connective tissue Hamartoma Vascular hamartomas Ichthyosis Congenital ichthyosis Integument see skin Lymphedema Congenital lymphedema

Muscular dystrophy Congenital malformation syndromes affecting multiple systems (under Other)

Muscle, other anomalies Other anomal. of muscle/tendon/fascia/connective tissue Ollier’s disease Endochondromatosis Other anomalies, nonteratogenic Other specified nonteratogenic anomalies Rickets of prematurity Osteodystrophies Scar, congenital Congenital scar Skin tags, accessory Accessory skin tags, congenital Skin, anomalty of ridge patterns Dermatoglyphic anomalies Skin, blistering Epidermolysis bullosa Skin, horny growth Keratoderma (congenital) Skin, hyperpigmentation Poikiloderma Skin, ichthyosis Congenital ichthyosis Skin, other anomalies Other anomalies of skin Skin, pigment anomalies Congenital pigmentary anomalies of skin Skin, scaling Congenital ichthyosis Syndromes, of the musculoskeletal system see syndromes (under Other) Tendons, other anomalies Other anomal. of muscle/tendon/fascia/connective tissue Head/Neck Cranial sutures, premature closure Premature closure of cranial sutures

Dysmorphic Features

Asymmetry of face (under Ear, Face, Neck) Compression facies Potter’s facies Other anomalies of face and neck

Eye socket, large Hypertelorism Face bones, anomalies Anomalies of skull and face bones Face, squashed Compression facies Forehead, deformity Congenital deformity of forehead Hair, other anomalies Other specified anomalies of hair Nasal septum, deviation Deviation of nasal septum, congenital Neck, contracture Contracture of sternocleidomastoid (muscle) Neck, tumor Sternomastoid tumor Occipital bone, deformity Platybasia Oxycephaly Acrocephaly Skull bones, anomalies Anomalies of skull and face bones Skull bones, missing Absence of skull bones Skull, abnormally long Dolichocephaly Skull, depressions Depressions in skull Skull, imperfect fusion of Imperfect fusion of skull

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Skull, missing Acrania Skull, plagiocephaly Plagiocephaly Torticollis Congential sternomastoid torticollis Tower skull Acrocephaly Wryneck Congential sternomastoid torticollis Trunk Abdominal wall, other anomalies Other anomalies of abdominal wall Bladder mucosa, prolapse Prolapse of bladder mucosa Breast, incomplete development Hypoplasia of breast Breast, accessory Accessory breast or nipple Breast, missing Absent breast or nipple Breast, other anomalies Other specified anomalies of breast CDH Congenital diaphragmatic hernia Chest, caved Pectus excavatum Chest, pigeon Pectus carinatum Clavicle, deformity Congenital deformity of clavicle Diaphragm, eventration of Eventration of diaphragm Diaphragm, missing Absence of diaphragm Diaphragm, other anomalies Anomalies of diaphragm Diaphragma, hernia Congenital diaphragmatic hernia Exomphalos Omphalocele Funnel chest Pectus excavatum Hernia, abdominal wall Other anomalies of abdominal wall Hernia, diaphragmatic Congenital diaphragmatic hernia Hernia, umbilical Omphalocele Nipple, accessory Accessory breast or nipple Nipple, missing Absent breast or nipple Pelvic girdle, other anomalies Other anomalies of lower limb, including pelvic girdle Pigeon chest/breast Pectus carinatum Rib, ectopic Cervical rib Rib, other anomalies Other anomalies of ribs and sternum Scapula, elevation of Congenital elevation of scapula Spine, defect in laminae of lumbar vertebra Prespondylolisthesis (lumbosacral) Spine, dissolution of vertebra Spondylolysis, lumbosacral region Spine, ectopic vertebra Spondylolisthesis Spine, fusion of Fusion of spine [vertebra], congenital Spine, missing vertebra Absence of vertebra, congenital Spine, one side undeveloped Hemivertebra Spine, other anomalies Anomalies of spine Sternum, other anomalies Other anomalies of ribs and sternum Umbilical hernia Omphalocele Vertebrae see spine Limbs Arthrogryposis Generalized flexion contractures of lower limb joints Carpal bones, accessory Accessory carpal bones Cleft hand Cleft hand, congenital Club foot Talipes equinovarus Club foot Talipes calcaneovalgus Club foot, unspecified Club foot, unspecified (& not elsewhere classified) Club hand Club hand (congenital) Edema, legs Hereditary edema of legs Feet, calcaneus coalition Coalition of calcaneus Feet, other anomalies Other deformities of feet (not elsewhere classified) Feet, tarsal coalition Tarsal coalitions Feet, valgus deformity, specified Valgus deformities of feet Feet, varus deformity, specified Varus deformities of feet Feet, webbed Syndactyly Fingers, accessory Polydactyly

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Fingers, enlarged Macrodactylia (fingers) Flat foot Congenital pes planus Foot bones, varus deformity Metatarsus primus varus Foot bones, varus deformity Metatarsus varus Foot, eversion of Talipes valgus Foot, inversion of Talipes varus Genu recurvatum Cong. genu recurvatum & bowing of long bones of leg Hand, lobster-claw Cleft hand, congenital Hand, spade-like Club hand (congenital) Hand, webbed Syndactyly Hip, dislocation Congenital dislocation of hip Hip, valgus deformity Coxa valga, congenital Hip, varus deformity Coxa vara, congenital Knee cap, under-developed Rudimentary patella Knee, contractures of Generalized flexion contractures of lower limb joints Knee, deformity Congenital deformity of knee Knee, hyperextension Cong. genu recurvatum & bowing of long bones of leg Lower limb joint, contracture Generalized flexion contractures of lower limb joints Lower limb, bowing of long bones Cong. genu recurvatum & bowing of long bones of leg Lower limb, missing Amelia Lower limb, missing/shortening of Ectromelia OR Phocomelia OR Hemimelia Lower limb, other anomalies Other anomalies of lower limb, including pelvic girdle Lower limb, other missing /incomplete development Other reduction deformities of lower limb (NEC) Nails, other anomalies Other specified anomalies of nails Pes abductus Talipes varus Pes adductus Talipes varus Pes planus Congenital pes planus Pes pronatus Talipes valgus Pes valgus Talipes valgus Pes varus Talipes varus Subluxation Congenital postural Talipes planus Congenital pes planus Toes, enlarged Macrodactylia of toes Trophedema Hereditary edema of legs Unspecified limb, missing Amelia Unspecified limb, missing/shortening of Ectromelia OR Phocomelia OR Hemimelia Unspecified limb, other anomalies Other anomalies of unspecified limb Unspecified limb, other missing /shortening of Other reduction deformities of unspecified limb (NEC) Upper limb, missing Amelia Upper limb, missing/shortening of Ectromelia OR Phocomelia OR Hemimelia Upper limb, other anomalies Other anomaly of upper limb Upper limb, other missing /incomplete development Other reduction deformities of upper limb (NEC) Nervous System Aqueduct of Sylvius, abnormality of Aqueduct of Sylvius: abnormality Arhinencephlay Absence or aplasia of part of brain Atelomyelia Hypoplasia of spinal cord Brachial plexus, ectopic Displacement of brachial plexus Brain & spinal cord, missing Amyelencephalus Brain, cavities in Porencephaly Brain, hernia see hernia Brain, incomplete development Agenesis or hypoplasia of part of brain Brain, large Macroencephaly Brain, missing Anencephalus Brain, missing (part) Absence or aplasia of part of brain Brain, missing half Hemianencephaly Brain, multiple anomalies Multiple anomalies of brain NOS Brain, other anomalies Other anomalies of brain

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Brain, reduction deformities Agenesis or hypoplasia of part of brain Brain, small Micrencephaly Brain, under-developed half Hemicephaly Cauda equina, abnormal development Dysplasia of spinal cord Cerbral cyst Congenital cerebral cyst Cerebral cortex, large Macrogyria Cerebral cortex, missing/under-developed Agyria or microgyria Cerebral cortex, narrowing Ulegyria Chari malformation, type II Arnold-Chari syndrome, type II Encephalocystocele Hydroencephalocele Foramina of Luschka, narrowing Atresia of foramina of Magendie and Luschka Foramina of Magendie, narrowing Atresia of foramina of Magendie and Luschka Ganglion cells, missing Aganglionosis (under Digestive/Genital) Head, small Microcephalus

Hernia, brain

Encephalocele Encephalomyelocele Hydroencephalocele Meningocencephalocele

Hernia, spinal

Hydromyelocele Meningomyelocele Myelocele Rachischisis Spina bifida (classified by region) Syringomyelocele

Holoprosencephaly Agenesis or hypoplasia of part of brain Hydrocephalus Congenital hydrocephalus Hydromeningocele (spinal) Hydromyelocele Hydromeningocele, cranial Hydroencephalocele Hydromicrocephaly Microcephalus Hydrorhachis Hydromyelia Macrocephaly Macroencephaly Meningocele (spinal) Meningomyelocele Meningocele, cerebral Encephalocele Myelatelia Dysplasia of spinal cord Myelocystocele Myelocele Myelodysplasia Dysplasia of spinal cord Nerve, incomplete development Agenesis of nerve Skull & spine, incomplete fusion Craniorachischisis Skull, cranial defect exposing brain Iniencephaly Spinal cord & brain, missing Amyelencephalus Spinal cord, abnormal development Dysplasia of spinal cord Spinal cord, accessory Diastematomyelia Spinal cord, incomplete development Hypoplasia of spinal cord Spinal cord, missing Amyelia Spinal cord, other anomalies Other anomalies of spinal cord Spinal cord, w/ increased fluid Hydromyelia Spinal meninges, anomaly Other congenital anomaly of spinal meninges Spine & skull, incomplete fusion Craniorachischisis Spine, hernia see hernia Syndromes, of the nervous system see syndromes (under Other) Other Adrenal gland, anomalies Anomalies of adrenal gland Conjoined twins, conjoined at buttocks Pygopagus Conjoined twins, conjoined at skull Craniopagus Conjoined twins, conjoined at sternum Xiphopagus Conjoined twins, conjoined at thorax Thoracopagus Conjoined twins, conjoined w/ separate heads Dicephalus

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Conjoined twins, unspecified fusion point Conjoined twins, unspecifed Endocrine gland, anomalies Anomalies of other endocrine glands Epiloia Bourneville’s disease Internal organs, reversed asymmetry Situs inversus Other anomalies, multiple Multiple congenital anomalies Other anomalies, specified Other specified anomalies Siamese Twins Conjoined twins Spleen, aberrant Ectopic spleen Spleen, accessory Accessory spleen Spleen, ectopic Ectopic spleen Spleen, enlarged Congenital splenomegaly Spleen, lobulation of Lobulation of spleen Spleen, missing Absent spleen Spleen, other anomalies Other anomalies of spleen Splenomegaly Congenital splenomegaly

Syndromes

Apert’s syndrome (under Musculoskeletal) Arnold-Chari syndrome, type II (under Nervous System) Axenfeld’s syndrome (under Eye) Bourneville’s disease (under Other) Crouzon’s disease (under Musculoskeletal) Eisenmenger’s complex (under Circulatory System) Endocardial cushion defect (under Circulatory System) Fallot’s triad or trilogy (under Circulatory System) Familial dysautonomia (under Nervous System) Fragil X syndrome (under Other) Gerbode defect (under Circulatory System) Harlequin fetus (under Musculoskeletal) Jaw-winking syndrome (under Nervous System) Klippel-Feil syndrome (under Musculoskeletal) Laurence-Moon –Biedl syndrome (under Other) Lutembacher’s syndrome (under Circulatory System) Madelung’s deformity (under Musculoskeletal) Marcus-Gunn syndrome (under Nervous System) Marfan syndrome (under Other) Milroy’s disease (under Musculoskeletal) Peters’ anomaly (under Eye) Prader-Willi syndrome (under Other) Prune belly syndrome (under Musculoskeletal) Rieger’s syndrome(under Eye) Riley-Day syndrome (under Nervous System) Roger’s disease (under Circulatory System) Scimitar syndrome (under Circulatory System) Spina bifida (classified by region) (Nervous System) Sprengel’s deformity (under Musculoskeletal) Taussig-Bing syndrome (under Circulatory System) Tetralogy of Fallot (under Circulatory System) Uhl’s disease (under Circulatory System) Down’s syndrome (under Chromosomal) Patua’s syndrome (under Chromosomal) Edward’s syndrome (under Chromosomal) Cri-du-chat syndrome (under Chromosomal) Antimongolism syndrome (under Chromosomal) Autosomal deletion syndrome(s) (under Chromosomal) Turner’s syndrome (under Chromosomal) Klinefelter’s syndrome (under Chromosomal)

Syndromes, not elsewhere classified Congenital malformation syndromes affecting multiple systems (under Other)

Tuberous sclerosis Bourneville’s disease

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Respiratory System Bronchiectasis Congenital bronchiectasis Bronchomalacia Other anomalies of larynx, trachea, and bronchus Bronchus & trachea, under-developed Rudimentary tracheal bronchus Bronchus, other anomalies Other anomalies of larynx, trachea, and bronchus Cricoid cartilage, cleft of Congenital cleft of cricoid or thyroid cartilage Epiglottis, fissure of Fissure of epiglottis Hernia, laryngocele Laryngocele Laryngeal stridor Stridor, laryngeal, congenital Larynx, hernia Laryngocele Larynx, other anomalies Other anomalies of larynx, trachea, and bronchus Larynx, web of Web of larynx Lung, accessory Accessory lung (lobe) Lung, cyst Congenital cystic lung Lung, honeycomb Honeycomb lung, congenital Lung, incomplete/abnormal development Agenesis, hypoplasia, and dysplasia of lung Lung, missing Absence or aplasia of lung (fissures) (lobe) Lung, other anomalies Other anomaly of lung Lung, sequestration of Sequestration of lung Lung, single lobe Azygos lobe (fissure), lung Mediastinum, cyst Congenital cyst of mediastinum Nasal sinus wall, deformity Deformity of wall of nasal sinus Nasal sinus wall, perforation of Deformity of wall of nasal sinus Nasopharynx, narrowing Atresia of nasopharynx Nose, anomlies of see under Face Pericardial & pleural sacs, abnormal communication Abnormal communication b/w pericardial & pleural sacs Pleural & pericardial sacs, abnormal communication Abnormal communication b/w pericardial & pleural sacs Pleural fold, anomalies Anomaly, pleural folds Respiratory system, other anomalies Other anomalies of respiratory system Thyroid cartilage, cleft of Congenital cleft of cricoid or thyroid cartilage Trachea & bronchus, under-developed Rudimentary tracheal bronchus Trachea, other anomalies Other anomalies of larynx, trachea, and bronchus Urinary/Renal System Bladder exstrophy Extroversion of bladder Bladder neck, narrowing Atresia and stenosis of urethra and bladder neck Bladder, ectopic Extroversion of bladder Bladder, other anomalies Other anomalies of bladder and urethra Dysplastic kidney Renal dysplasia or dysgenesis Ectopia vesicae Extroversion of bladder Hydronephrosis Unspecified obstructive defect of renal pelvis and ureter Hydroureter Congenital hydroureter Imperforate urinary meatus Atresia and stenosis of urethra and bladder neck Kidney pelvis, obstructive defect Unspecified obstructive defect of renal pelvis and ureter Kidney, abnormal development Renal dysplasia or dysgenesis Kidney, abnormal shape Discoid kidney Kidney, abnormal shape Horseshoe kidney Kidney, accessory Accessory kidney Kidney, atrophy Agenesis or hypoplasia of kidney(s) Kidney, cystic disease Other cystic kidney disease Kidney, ectopic Ectopic kidney Kidney, enlarged/giant Hyperplasia of kidney Kidney, fusion of Fusion of kidneys Kidney, incomplete development Agenesis or hypoplasia of kidney(s) Kidney, lobulation of Lobulation of kidney Kidney, malrotation Ectopic kidney Kidney, medullary cystic disease Medullary cystic kidney

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Kidney, medullary sponge Medullary sponge kidney Kidney, missing Congenital absence of kidney(s) Kidney, other anomalies Other anomalies of kidney Kidney, polycystic Multicystic kidney Kidney, small Agenesis or hypoplasia of kidney(s) Kidney, trifid Trifid kidney (pelvis) Rectum & urethra, fistula of Congenital urethrorectal fistula Umbilical sinus, persistent Patent (of) urachus Urachus, anomalies Other anomalies of urachus Urachus, cyst Cyst (of) urachus Urachus, fistula Fistula (of) urachus Urachus, persistant Patent (of) urachus Ureter, accessory Accessory ureter Ureter, anomalous implantation Implantation, anomalous, of ureter Ureter, anomalous origin/deviation of Ectopic ureter Ureter, ectopic Ectopic ureter Ureter, missing Absent ureter Ureter, obstructive defect Unspecified obstructive defect of renal pelvis and ureter Ureter, other anomalies Other anomalies of ureter Ureter, weak Adynamic ureter Ureteric orifice, displaced Ectopic ureter Ureterocele Congenital ureterocele Ureteropelvic junction, obstruction Congenital obstruction of ureteropelvic junction Ureterovesical junction, obstruction Congenital obstruction of ureterovesical junction Urethra & rectum, fistula of Congenital urethrorectal fistula Urethra, impermeable Impervious urethra Urethra, narrowing Atresia and stenosis of urethra and bladder neck Urethra, other anomalies Other anomalies of bladder and urethra Urethral valve, formation of Urethral valve formation Urinary meatus, imperforate Atresia and stenosis of urethra and bladder neck

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APPENDIX V DEFINITIONS OF DIAGNOSIS OF INFECTION

-When confirming a diagnosis for a given infection episode, look first for a positive culture, then for the administration of appropriate antibiotic therapy and finally look for the clinical signs listed below to infer the appropriate diagnosis type for a particular infection. CENTRAL NERVOUS SYSTEM INFECTION: Includes meningitis, ventriculitis, spinal abscess without meningitis and

brain abscess (ie. epidural abscess). Meningitis or ventriculitis must meet the following criterion:

a) A pathogen must be isolated from or detected in CSF. EYE, EAR, NOSE, THROAT AND MOUTH INFECTION: Eye infection includes conjunctivitis and other eye infections. Ear

infections include otitis externa, otitis media, otitis interna, and mastoiditis. Nose, throat and mouth infections include oral cavity infections, upper respiratory infections, and sinusitis. Record only infections where pathogens were isolated/detected (including viruses) from cultures.

Conjunctivitis must meet either of the following criteria: 1. Pathogen isolated from culture of purulent exudate obtained from conjunctiva or contiguous tissues, such as

eyelid, cornea, meibomian glands, or lacrimal glands. 2. Pain or redness of conjunctiva or around eye and any of the following:

a) White blood cells and organisms seen on Gram stain of exudate b) Purulent exudate c) Positive antigen test on exudate or conjunctival scraping d) Multinucleated giant cells seen on microscopic examination of conjunctival exudate or scrapings e) Positive viral culture on conjunctival exudate f) Diagnostic single antibody titer (IgM) or fourfold increase in paired serum samples (IgG) for pathogen

-Conjunctivitis organisms include: Neisseria gonorrhoeae, Neisseria meningitidis, Chlamydia trachomatis,

Staphylococcus aureus, Moraxella catarrhalis, Haemophilus influenzae, Haemophilus species, Streptococcus pneumoniae, Peptostreptococcus, Peptococcus, Streptococcus pyogenes, Pseudomonas aeruginosa, Adenovirus, Herpes simplex, Enterococcus, Other Gram negative enteric bacteria (E. Coli, etc.) Upper respiratory tract infection (pharyngitis, laryngitis, epiglottis and viral infections (including parainfluenza, influenza, adenovirus, and respiratory syncytial virus(RSV) must meet the following criterion: 1. Patient is less than or equal to 12 months of age and has two of the following: fever (>38oC), hypothermia

(<37oC), apnea, bradycardia, nasal discharge, or purulent exudate in throat, and any of the following: a) Organism isolated from culture of specific site b) Organism isolated from blood culture c) Positive antigen test on blood or respiratory secretions d) Diagnostic single antibody titer (IgM) or fourfold increase in paired serum samples (IgG) for pathogen e) Physician’s diagnosis

Lower respiratory tract (pneumonia) must meet the following criterion:

1. Patient is less than or equal to 12 months of age and has chest x-ray changes consistent with ‘pneumonia’,

‘consolidation’ or ‘infiltrates’ and worsening respiratory signs (increased respiratory distress or oxygen or ventilation requirements in the previous 24 hours (ie. temp. instability, apnea, bradycardia, etc.)

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GASTROINTESTINAL SYSTEM INFECTION: Includes gastroenteritis, hepatitis, necrotizing enterocolitis, gastrointestinal tract infections, and intraabdominal infections not specified elsewhere.

Gastroenteritis must meet either of the following criteria: 1. Acute onset of diarrhea (liquid stools–2 or more in 12 hours) with or without vomiting or fever (>38oC) and no

likely noninfectious cause (e.g. diagnostic tests, therapeutic regimen, acute exacerbation of a chronic condition, psychological stress)

2. A positive enteric pathogen isolated on culture and two of the following with no other recognized cause: nausea, vomiting, abdominal pain, or liquid stools.

Infant necrotizing enterocolitis (NEC) must meet the following criterion: 1. According to Bell’s criteria, stage 2 or higher. If there is definite pneumatosis (air in the bowel wall) or

portal/hepatic air (air in the liver) diagnosed by x-ray, or if there is a surgical or autopsy diagnosis of NEC. If surgical autopsy diagnosis conflicts with x-ray diagnosis, the surgical/autopsy diagnosis takes priority. X-rays showing free air WITHOUT pneumatosis do NOT count as NEC diagnosis. Vomiting, abdominal distension and bloody stools without pneumatosis may lead to a suspected diagnosis and treatment, but is not counted as NEC diagnosis.

PRIMARY BLOODSTREAM INFECTION: Includes laboratory-confirmed bloodstream infection and clinical sepsis. Laboratory-confirmed bloodstream infection must meet one of the following criteria: 1. Recognized pathogen isolated from a blood culture where pathogen is not related to infection at another site.1 2. One of the following: fever (>38oC), chills, or hypotension and any of the following:

a) Common skin contaminant2 isolated from 2 blood cultures drawn on separate occasions and where the organism is not related to infection at another site1

b) Common skin contaminant isolated from patient’s blood culture with intravascular access device and physician institutes appropriate antimicrobial therapy

c) Positive antigen test on blood3 and organism is not related to infection at another site 3. Patient is less than or equal to 12 months of age and has one of the following: fever (>38oC), hypothermia

(<37oC), apnea, or bradycardia and any of the following: a) Common skin contaminant2 isolated from 2 blood cultures drawn on separate occasions and where

the organism is not related to infection at another site1 b) Common skin contaminant isolated from patient’s blood culture with intravascular access device

and physician institutes appropriate antimicrobial therapy c) Positive antigen test on blood3 and organism is not related to infection at another site

Clinical sepsis must meet either of the following criterion: 1. Patient is less than or equal to 12 months of age and has one of the following clinical signs or symptoms with no

other recognized cause: fever (>38oC), hypothermia (<37oC), apnea, or bradycardia and all of the following: a) Blood culture not done or no organism or antigen detected in blood b) No apparent infection at another site c) Physician institutes appropriate antimicrobial therapy for sepsis

1 When an organism isolated from a blood culture is compatible with a related nosocomial infection at another site, the bloodstream infection is classified as a secondary bloodstream infection. Exceptions to this are intravascular device-associated bloodstream infections, all of which are classified as primary even if localized signs of infection are present at the access site. 2 Organisms that are normal skin flora (eg. diphtheroids, Bacillus sp., Propionibacterium sp., coagulase-negative staphylococci, or micrococci). 3 Detection of bacterial, fungal, or viral antigen (eg. Candida sp.,herpes simplex, varicella zoster, Haemophilus influenzae, streptococcus pneumoniae, Neisseria meningitidis, group B strptococci) by rapid diagnostic test (eg. counterimmunoelectrophoresis, coagulation, or latex agglutination)

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RESPIRATORY SYNCYTIAL VIRUS (RSV): A viral infection of the nose and throat and a major cause of bronchiolitis and pneumonia in young children.

SKIN AND SOFT TISSUE INFECTION: Includes skin infection (other than an incisional wound infection), soft tissue

infection, decubitus ulcer infection, burn infection, breast abscess or mastitis, omphalitis, infant pustulosis, and newborn circumcision infection.

Skin infection must meet either of the following criteria: 1. Purulent drainage, pustules, vesicles, or boils. 2. Two of the following at affected site: localized pain or tenderness, swelling, redness, or heat and any of the

following: a) Organism isolated from culture of aspirate or drainage from affected site; if organism is normal skin

flora, must be a pure culture of a single organism b) Organism isolated from a blood culture

Soft tissue infection (necrotizing fasciitis, infectious gangrene, necrotizing cellulitis, infectious myositis, lymphadenitis, or lymphangitis) must meet one of the following criteria: 1. Organism isolated from culture of tissue or drainage from affected site. 2. Purulent drainage from affected site. 3. Abscess or other evidence of infection seen during surgery or by histopathologic examination. 4. Two of the following at affected site: localized pain or tenderness, redness, swelling, or heat and organism

isolated from blood culture. Pustulosis in infant (< 12 months of age) must meet either of the following criteria: 1. Infant has pustules and physician’s diagnosis. 2. Physician institutes appropriate antimicrobial therapy. URINARY TRACT INFECTION: Includes symptomatic urinary tract infection, asymptomatic bacteriua, as well as other

infections of the urinary tract. Symptomatic urinary tract infection must meet either of the following criteria:

1. Patient is less than or equal to 12 months of age and has one of the following: fever (>38oC), hypothermia (<37oC), apnea, bradycardia, dysuria, lethargy, or vomiting and a urine culture of >102 colonies/ml of urine with no more than 2 species of organisms in a catheter specimen or bladder tap.

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APPENDIX VI

ERROR CHECKING RULES FOR INFECTION EPISODES How to use the following flow charts:

1. Begin by checking to see if all the “organism codes” listed within a suspected episode are the same or different.

a. If they are different, follow Figure 1 below to ask a number of questions which will determine whether a contaminant exists or not and if no contaminant exists whether it is a valid entry or not. An invalid entry occurs in this case (when the organism codes are different), whenever it appears that 2 infections are occurring concurrently, but have not been scored as such by the abstractor. Proceed to #2 to check the diagnosis type by following the rules laid out below.

b. If they are the same, follow Figure 2 to determine if the entry is valid or not. An invalid entry occurs in this case (when the organism codes are the same), whenever it appears that 2 infections are occurring concurrently, but have not been scored as such by the abstractor. Proceed to #2 to check the diagnosis type by following the rules laid out below.

c. If there is only one organism/OR no organisms listed in an episode, proceed to #2 to check the diagnosis type by following the rules laid out below.

2. Finally, check the following rules to determine if the correct diagnosis type has been entered. Check all episodes of infection, however, if there was a contaminant in the episode of infection, omit the contaminant cultures, and use only the remaining cultures in the following error checking rules:

• If there is a positive CSF culture, should be scored as either: “meningitis” OR “CNS infection”

• If there is a positive Eye culture, should be scored as either: “conjunctivitis” OR “eye” OR “other eye, nose &

mouth infection”

• If there is a positive Ear culture, should be scored as: “ear”

• If there is a positive Skin culture, should be scored as either: “skin” OR “soft tissue infection” OR “pustulosis”

• If there is a positive Urine culture, should be scored as: “urinary tract infection” UNLESS there is also a

positive CSF culture in which case should be scored as either: “meningitis” OR “CNS infection”

• If there is a positive Lung culture, should be scored as: “upper resp. T. infection” OR “lower resp. T. infection” OR “respiratory syncytial virus”

• If there is at least one positive culture, than it can NOT be scored as “clinical sepsis”

• If there are no positive cultures, than it can NOT be scored as: “lab-confirmed bloodstream infection”,

“meningitis”, “CNS infection”, or “urinary T. infection”.

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Different Organisms

Check culture “dates”

Different Dates (no contaminants)

Same Dates

Check culture “result”

More than 1 Positive

All Negative or 1 Positive & Others Negative

(no contaminants) VALID

Check “culture” type

Check culture “result”

More than 1 Positive INVALID

All Negative or 1 Positive & Others Negative

VALID

Score each culture containing a different organism as a separate episode of infection. Therefore if 2 different

organisms found in the blood on different days, record as 2 separate lab-bloodstream infections.

Different Types (no contaminants)

INVALID

Same Types CONTAMINANT!!

Score each culture containing a different organism as a separate episode of infection. Therefore a blood culture with organism A is scored as a lab-

bloodstream infection, whereas a skin culture with organism B taken the same day would be scored as a skin infection. Therefore this patient would have 2 infections (1 skin & 1 blood) running concurrently, give that each infection

showed DIFFERENT organisms.

Record this culture, but ignore it when determining the type of

infection diagnosis.

FIGURE 1: DETERMINING IF CONTAMINANTS EXIST WHEN DIFFERENT ORGANISMS FOUND IN ONE EPISODE

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Same Organisms (no contaminants)

Check culture “result”

All Negative or 1 Positive & Others Negative

VALID

More than 1 Positive

Check “culture” type

FIGURE 2: DETERMINING IF THERE IS AN INVALID ENTRY WHEN NO CONTAMINANT EXISTS IN AN EPISODE

Only One Type* of Culture VALID

3 or More Different Types* of Cultures

INVALID ENTRY!!

2 Different Types* of Cultures where Neither are

Blood Cultures INVALID ENTRY!!

2 Different Types* of Cultures, where 1 is a Blood Culture

VALID

Score each type of culture as a separate infection episode. Therefore, if the same organism

appears in urine culture and an eye culture, score as 2 concurrent infections, a UTI and an

Eye infection, respectively.

*Types meaning different categories of cultures, therefore if there are a total of 3 cultures (skin, skin, blood), then this counts as only 2 DIFFERENT types, therefore this example would be a valid entry.

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APPENDIX VII POSITIVE CULTURES - ORGANISM LIST

orgcode orgtype org# ABA Acinetobacter Bauannii 2.2 ACINE Acinetobacter species (not specified) 2.2 ACVA Acinetobacter calcoaceticus Var Anitratus 2.2 ADS Adenovirus 7 ALW Acinetobacter Lwoffii 2.2 ANR0 Anaerobic Gram Negative Rod(s) 2

ASP Actinomyces Acremonium Species 3.2 AST Alpha Strep 1.4 AUR Staph Aureus Coga + 1.1 BHSB Beta-Hemolytic Staph B 1 BSB Beta Streptococcus Group B 1.2 BSP Bifidobacterium Species 3.2 CAL Candida Albicans 4.1 CAND Candida Glabrata 4.2 CANDIDA Candida Parapsilosis 4.2 CDI Citrobacter Diversus 2.2 CFR Citrobacter Freundii 2.2

CFU Candida Fugis 4.2

CGUI Candida Guilliermondii 4.2

CJE Campylobacter Jejuni 3.1 CLU Cand 4.2 CMV Cytomegalovirus 5.1 CONS Staph Coagulase Negative 1.3 COS Corynebacterium Species 3 CPA Candida Species (unspecified) 4.2 CSP Candida Lusitaniae 4.2 CTR Candida Tropicalis 4.2

CTRA Chylamydia Trachomatis 3 DPTH Diptheriods 3.2 EAE Eubacterium Aerofaciens 2.2 EAG Enterobacter Agglomerans 2.2 EAV Enterococcus Avium 1.6 ECL Enterobacter Cloacae 2.2 ECOLI Escherichia Coli 2.1 EFA Enterococcus Faecalis, Beta-Lactamase Negative 1.6 EGE Enterococcus Gallinarum 1.6 ENC Enterococcus Species 1.6 ENTERIC Enteric Strep 1.4 ESA Enterobacter Sakazakii 2.2

GBS Group B Strep 1.2 HIP Haemphuilus Influenza, Beta-Lactamase Positive 2.3 HSV2 Herpes Simplex Virus Type 2 5.3 IBV Influenza B Virus 5.3 INF Influenza 5

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orgcode orgtype org# KLEBS Klebsiella 2.2 KOX Klebsiella Oxytoca 2.2 KPN Klebsiella Pneumoniae 2.2 LLA Lactococcus Lactis 3.2 LSP Lactobacillus Species 3.2 MFU Malassezia Furfur 4.3 MSP Moraxella Species 2.2 NBA Gram Negative Bacteria 2 NRO Gram Negative Rod(s) (includes coliform) 2 NSP Neisseria Species 3.2 PAE Pseudomonas Aeruginosa 2.2 PAL Pseudomonas Alcaligenes 2.2 PAS Pasteurella Aerogenes 2.2 PBA Gram Positive Bacteria 3 PC0 Gram positive Coccus (Cocci) 1 PFL Pseudomonas Fluorescens Group 2.2 PINF Parainfluenza 6 PR0 Gram Positive Rods 3 PSP Proteus Species 2.2 RRU Rhodotorula Rubra 4.3 RSV Respiratory Syncytial Virus 5.2 SAG Salmonella Agona 2.2 SAN Strep Anginosus 1.4 SAU Staph Aureus Coag + 1.1 SBOV Strep Bovis 1.6 SCN Staph Coagulase Negative 1.3 SCU Staph Capitus Ureolyticus 1.3 SEP Staph Epidermis 1.3 SHM Staph Hemolyticus 1.3 SHO Staph Hominis 1.3 SLU Staph Lugdunensis 1.3 SMA Serratia Marcescens 2.2 SMI Strep Milleri 1.4 SPN Strep Pneumoniae 1.5 SSM Strep Anginosus 1.4 SSP Staph Species 1.3 STY Salmonella Typhimurium 2.2 SVIR Strep Veridans Group 1.4 SWA Staph Warneri 1.3 Y Yeast 4

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APPENDIX VIII DEFINITION OF APPROPRIATE FIO2

*Remember that “appropriate” FiO2 refers to the FiO2’s collected on days 28 & week 36, NOT to the FiO2’s listed under blood gases in SNAP. An FiO2 value is considered appropriate when one or more of the following apply: A. Arterial paO2 or transcutaneous TcpO2 is 50-80 torr (i.e. 6.7 - 10.7 kPa); OR B. FiO2 is more than 25% when arterial oxygen saturation by pulse oximeter (SaO2) is 88-95%; OR C. FiO2 is less than or equal to 25% when arterial oxygen saturation by pulse oximeter is more than 88%; OR D. FiO2 is 100% when arterial oxygen saturation by pulse oximeter (SaO2) is less than 96%. E. If there are no appropriate FiO2s while a baby is receiving supplemental oxygen (or while a baby is not

receiving supplemental oxygen) because saturations are continuously below 88%, score the high FiO2 as one more than the highest FiO2 listed and the low FiO2 as the missing value.

General FiO2 Scoring Information: · If none of the FiO2s listed meet any of the definitions above, then score FiO2 as the missing value. · If you ever find an appropriate FiO2 of 100, even if the rest of the FiO2s are unknown, score the high

appropriate FiO2 as 100 (This is always true even if one of the conditions below states something contradictory).

· If you ever find an appropriate FiO2 of 21, even if the rest of the FiO2s are unknown, score the low appropriate FiO2 as 21 (This is always true even if one of the conditions below states something contradictory).

· If both pre and post TcPO2s are listed, use the post TcPO2. · If both post-TcPO2 and saturations are listed during the same time block, do it once using each, and record

the one that gives the higher FiO2. ⋅ Do not count FiO2s associated with transient oxygen saturations (desats). Only include FiO2s associated

with sustained (continuous) oxygen saturations. · For moribund babies who receive no supplemental oxygen, you should score appropriate FiO2s as the

missing value. · If an infant is on nasal cannula for part of a scoring period and some other form of respiratory support

(Hood, CPAP, IMV or HiFi) for the other part of that period and there is at least one appropriate FiO2 from the non-nasal cannula part of the period, score the first appropriate FiO2 in the scoring period.

· FiO2s associated with Hood/CPAP/Mechanical ventilation or HiFi ventilation should be used if appropriate.

Unknown/ambiguous values: · If you know that supplemental oxygen was given, but you do not know the amount (e.g. oxygen given for

an extended period of time in the delivery room), score FiO2 as the missing value. · If you are missing the day 28 or week 36 flow sheet and you can get accurate information from other

sources, score based on these others sources. Otherwise, use the closest complete 24 hour scoring period (it is okay to adjust times of day). If there is no appropriate time period score the missing value.

· If you know the FiO2, but not the SAT, ignore this value and select from the remaining FiO2s. · If you know the SAT, but not the FiO2, select from the remaining FiO2s · If all of the FiO2s are either listed without SATs or are inappropriate, score FiO2 as the missing value. · If the SAT is listed as a range (e.g. 90-100), score the FiO2 if it is appropriate according to any of the

values in the range. · If the SAT is listed as an ambiguous range (e.g. 90s), and you cannot tell whether the FiO2 is appropriate,

do not score the FiO2 as appropriate. · If the FiO2 is listed as a range (e.g. 24-28 with a SAT of 96), score any values in the range that are

appropriate (24 and 25 in this example). · If the FiO2 is listed as a range, score the lowest appropriate FiO2 value in that range for the FiO2 in the

ABG box (24 in the above example). · FiO2s that are listed as a decimal value should be rounded (up for .5 and down for .4) and then scored

appropriately.

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APPENDIX IX DEFINITIONS OF MEDICAL TERMS

A AGENESIS: A condition where part of the body (i.e. an organ or tissue) does not completely develop. ANALGESIC: A drug that relieves pain (aspirin, morphine). ANEMIA: A decrease in the quantity of hemoglobin (the oxygen carrying pigment of the blood). Symptoms include

fatigue, breathlessness and poor resistance to infection. Often due to blood loss or iron deficiency. ANESTHETIC: An agent that reduces or abolishes sensation in either the whole body or a particular area. ANEURYSM: Severe swelling in the wall of an artery, cause by degenerative diseases which damage the muscular

coat of the vessel or a congenital deficiency in the muscular wall. ANTIBODY: A special kind of blood protein that is made by the immune system in response to the presence of a

particular antigen to attack that antigen and render it harmless. ANOMALY: Malformation of an organ. APLASIA: Lack of development of an organ or tissue. APNEA: Absence of breathing. This often occurs in “apneic spells,” short recurrent episodes of cessation of breathing

with slowing of the heart rate, usually ending with a deep breath. Babies sometimes need mechanical stimulation to keep breathing.

ASCITES: The accumulation of fluid in the peritoneal cavity, causing abdominal swelling. ASPHYXIA: The consequence of lack of oxygen, suffocation. ASPIRATION: Withdrawal of fluid or cells from the body by means of suction. ATELECTASIS: Failure of part of the lung to expand. Occurs in premature babies where lungs are too immature to

produce surfactant. ATRESIA (STENOSIS): Congenital absence or abnormal narrowing/closure of a body opening. TRICUSPID ATRESIA: Obstructs blood flow within heart from right atrium to ventricle. B BILI-LITES: Lights, usually florescent, placed in a rack above the incubator to help clear the bilirubin by photo-

oxidation (also known as phototherapy). Bright daylight does the same thing. BILIRUBIN: The pigment in the blood that makes skin yellow (as seen in jaundice). It rises whenever blood is broken

down by the body, as occurs in infants in the first days of life. It also rises in some types of liver disease. BRADYCARDIA: Slowing of the heart rate. BRONCHOPULMONARY DYSPLASIA (BPD) OR “CHRONIC LUNG DISEASE”: Constant and recurring lung injury with

ongoing repair and healing. BPD occurs in 5-30% of infants treated with oxygen and/or mechanical ventilation, for example, prolonged treatment of IRDS or RDS (Idiopathic Respiratory Distress Syndrome). BPD is a disease that is spawned in the NICU. The primary injury (i.e. IRDS) is aggravated by continually high-inspired oxygen tensions and by barotrauma from mechanical ventilation and by infection. BPD is treated by decreasing the factors that produce the injury and by allowing the lung to heal. The condition may last for weeks or months.

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C CANNULA: A hollow tube designed for insertion into a body cavity, or blood vessel. CAPUT SUCCEDANEUM: Temporary swelling of the head; occurs due to compression of muscles during birth CAT SCAN: Computerized axial tomography (CAT or “CT scan”). This is a procedure using a series of x-ray pictures

taken across several planes that are then assembled by computer to distinguish varying densities in the pictured areas. It is the best way to locate blood or other masses in the head.

CATHETER: A hollow tube. Catheters come in different sizes to insert in blood vessels or the bladder, or any site that

requires drainage. CHEST TUBE: Used to aspire fluid from the lungs. CHOANA: A funnel-shaped opening, particularly either of the openings b/w the nasal cavity & the pharynx. COARCTATION: Congenital narrowing of a short segment of the aorta. Symptom: high BP in the upper part of the

body & arms & low BP in the legs. Treatment: surgery. COLOSTOMY: A part of the colon (large bowel) is brought thru the abdominal wall for draining intestinal discharge. CONGENITAL: Present at birth. CONJUCTIVAL EXUDATE: The slow escape of liquids from the membrane that covers the eye. CONTINUOUS POSITIVE AIRWAY PRESSURE (CPAP): Used to help keep the immature lung expanded. A more intense

therapy than blow-by oxygen and nasal cannula, but less intense than positive pressure mechanical ventilation.

CYANOSIS: Discolouration of the skin and mucous membranes due to an inadequate amount of oxygen in the blood.

Associated with heart defects/failure, lung diseases and asphyxia. D DERMOID CYST: A cyst (abnormal sac lined w/ epithelium & filled w/ fluid) containing hair, hair follicles &

sebaceous glands. Often found at sites of fusion of developing sections in the embryo. DEXTROSE: A form of glucose (sugar). DIAPHORETIC: A drug that causes an increase in sweating. These antipyretic drugs have diaphoretic activity, which

helps to reduce the body temp in fevers. DIATHESIS: A higher than normal tendency to acquire certain diseases. DISSEMINATED INTRAVASCULAR COAGULATION (DIS): A disorder due to over-stimulation of the blood-clotting

mechanisms in response to disease or injury, i.e. infection, asphyxia or hypothermia.

DOPPLER: An auditory signal produced by blood in vessels, used to measure blood pressure. DRUG WITHDRAWL SYNDROME: Symptoms may include: irritability, sweating, crying, nausea, vomiting, increased

heart rate, increased breathing rate and seizures. DUCTUS ARTERIOSUS: This blood vessel between the aorta and pulmonary artery us open before birth and should

close after birth. Sometimes in premature infants it does not close and may require ligation or operation. DYSGENESIS: Defective development. DYSPLASIA: An abnormality of development of pathology, size, shape or organization of cells.

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E

ECTOPIC: An organ/structure which is abnormally positioned within the body. ELECTROENCEPHALOGRAM (EEG): A measure of the electrical activity of the brain. ELECTROCARDIOGRAM (EKG OR ECG): A measure of the electrical activity of the heart. ENCEPHALOCELE: The protrusion of brain tissue through the skull; severe mental & physical disorders. ENDOTRACHEAL: Inside the windpipe (trachea). ENTEROTOMY: Surgical incision into the intestine. ERB’S PALSY: Partial paralysis of arm caused by injury to the brachial plexus during birth. ERYTHROBLASTOSIS: Presence of precursors of RBCs in blood; occurs with increased RBC production,

i.e. with anemia or tumors EXTRACORPOREAL MEMBRANE OXYGENATION (ECMO): Cardiopulmonary bypass used to support gas exchange in

infants w/ respiratory failure unresponsive to medical management. Allows lung rest & recovery. EXTUBATE: To remove a tube from a body orifice.

F

FECALITH: A small hard mass of feces; a cause of inflammation. FISTULA: An abnormal communication b/w 2 hollow organs or b/w a hollow organ & the exterior. Often due to

infection or injury. FUNDOPLICATION: The upper part of the stomach is wrapped around the lower esophagus to treat gastroesophageal

reflux disease. G

GASTROSCHISIS: Abdominal wall fails to close at the right of the umbilical cord, the intestine prolapses (downward displacement of an organ due to lack of supporting tissues) thru & has no covering. Treatment: surgery.

GASTROSTOMY: An opening is made into the stomach from the outside to allow food/fluid to be poured directly into

the stomach when the esophagus is obstructed or healing after surgery. GAVAGE: Feeding through a small tube placed through the nose or mouth and ending in the stomach or upper

intestine (may be continuous or intermittent). When the route is nose-to-stomach, it is called NG. When it is nose-to-small intestine (jejunum) it is NJ. When it is mouth-to-stomach it is OG or orogastric.

GESTATIONAL AGE: Age from conception.

H

HEMATEMESIS: Vomiting blood. HEMATOCRIT: (or CRIT) The percent of red cells in the blood. An increased concentration is polycythemia (often

coincides w/ a decrease of O2 in the tissues). A decreased concentration is anemia (symptoms: excessive fatigue, breathlessness & poor resistance to infection).

HEMATOMA: Accumulation of blood within the tissues that clots to form a solid swelling. Problematic because of

the increased pressure it causes within the tissues (i.e. especially when in the brain). HEMOGLOBIN: The amount of oxygen-carrying pigment in the blood. A low hemoglobin could be from too few red

blood cells, or too low a concentration of hemoglobin in each red cell.

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HEMOLYSIS (HEMOLYTIC DISEASE): The destruction of red blood cells (RBCs) or erythrocytes. Usually results from defects in the RBCs or from poisoning, infection, or the action of antibodies. It usually leads to anemia.

HERNIA: The protrusion of an organ or tissue out of the body cavity in which it normally lies.

Diaphragmatic hernia: an abdominal organ protrudes through the diaphragm into chest cavity. Omphalocele: an umbilical hernia (the protrusion of abdominal organs into the umbilical cord)

HERNIORRHAPHY: Surgical repair of a hernia in which a plastic mesh is placed at the hernia site. HEMORRHAGE: Bleeding from a ruptured blood vessel, either internally or externally. Loss of high amounts of

blood can lead to shock, collapse and eventually death. HYDRAMNIOS: An abnormally large amount of amniotic fluid surrounding the fetus from about the 20th week of

pregnancy. Symptoms: uterus becomes swollen, causing breathlessness, excessive fluid in body tissues and leads often to a difficult birth. Often associated with twin pregnancies or fetal abnormalities. Usually confirmed by ultrasound.

HYDROCELE: The accumulation of watery liquid in a sac (often the sac surrounding the testes), characterized by

painless enlargement of the scrotum, treated with surgical drainage of fluid. HYDROCEPHALUS: Abnormal accumulation of fluid in the head. Excessive pressure from bleeding or abnormalities

in the circulation of spinal fluid can lead to a full and tense fontanelle and eventually too rapid head growth.

HYDROPS FETALIS: The state of a baby born w/ severe edema, fluid accumulates in the body cavities; high mortality

rate. Caused by: anemia, congenital heart, lung or kidney disease. HYPERALIMENTATION: Provision of nutrients by vein. Hyper- usually means in excess of needs. When used as a

prefix for alimentation, it implies addition of sufficient quantities to meet needs. HYPERCAPNIA: Presence in the blood of an abnormally high concentration of carbon dioxide. HYPERPLASIA: Abnormal multiplication of normal cells in a tissue. HYPERTROPHY: The enlargement or overgrowth or an organ or structure. HYPOPLASIA: Incomplete development of an organ or tissue.

I

ILEOSTOMY: Ileum brought through abdominal wall, creates an artificial opening through which intestinal discharge collected. By-passes colon allowing it to rest after colitis or injury/surgery to the colon.

IMPERFORATE: Having abnormal closure or absence of a body opening (atresia). INCUBATOR: The covered plastic device in which infants are placed to help maintain temperature, humidity, and

appropriate oxygen concentration. Also called an isolette. INSPISSATED: Thickened or condensed, as by evaporation or absorption of fluid. INTRAUTERINE GROWTH RETARDATION (IUGR): When a baby is born with a weight on or below the 10th percentile

for the predicted gestational age. Causes include maternal disease (i.e. infection, malnutrition, high blood pressure, smoking and alcoholism), fetal disease, multiple births, preterm.

INTRAVENOUS (IV): Into a vein. INTRAVENTRICULAR HEMORRHAGE (IVH): Intracranial bleeding or blood in the ventricular system in the centre of

the brain. Classification schemes have been provided to assess the degree of bleeding or amount of blood present as seen on a CT scan (see below). IVH often clears up spontaneously but may require treatment. It may also result in subsequent neurological problems, such as mental retardation and developmental delay.

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Grade 0 = no bleeding Grade 1 = Echogenic lesion confined to the germinal matrix & not extending into the ventricles or

adjacent parenchyma (the functional part of an organ, as opposed to the supporting tissue). Subependymal hemorrhage (SEH) or Germinal matrix hemorrhage (GMH): bleeding under the thin membrane that lines the brain ventricles (this membrane is involved in the formation of CSF).

Grade 2 = Echogenic lesion originating in the germinal matrix & extending into the ventricles, though not distending the ventricles w/ blood.

Grade 3 = Echogenic lesion originating in the germinal matrix & extending into the ventricles, & distending the ventricles w/ blood.

Grade 4 = Echogenic lesion in the parenchyma of the brain (white or gray matter), aka: Intraparenchymal hemorrhage (IPH) or intraparenchymal echodensity (IPE)

INTUBATE: To put a tube into the trachea to permit mechanical ventilation. ISOIMMUNIZATION: The development of antibodies within the fetus or newborn against antigens from the mother.

K

KERNICTERUS: Staining/damage to brain by bile pigment; often occurs in hemolytic disease. KLUMPKE’S: Partial paralysis of arm caused by injury to the brachial plexus during birth.

L

LUMBAR PUNCTURE (LP): A needle is inserted into a space between lumbar vertebrae to permit withdrawal of some spinal fluid.

M

MECONIUM: The dark green-black viscous material in the bowel of an infant before birth. It is usually passed in the first 24 hours. The presence of meconium in the amniotic fluid during labour indicates fetal distress. Meconium aspiration refers to the problem of meconium finding its way into the amniotic fluid and physically obstructing the glottis, trachea, or smaller airways.

MELENA: Black feces due to partly digested blood in the digestive tract. MENINGITIS: Inflammation of the meninges due to infection caused by viruses or bacteria. Symptoms: fever,

intolerance to light & sound, rigidity of muscles (especially in neck), convulsions, & vomiting. MYASTHENIA GRAVIS: A chronic disease marked by abnormal weakness of muscles. MYELOMENIGOCELE: The spinal cord & nerve roots are exposed; constant risk of infection. Symptoms: paralysis,

numbness of the legs & urinary incontinence.

N

NECROSIS: Death of tissue. NECROTIZING ENTEROCOLITIS (NEC): The occurrence of impaired blood supply to portions of the bowel. This leads

to small perforations with air dissecting in the bowel wall or even entering the peritoneal cavity. NEC is usually a disease of premature infants. The exact cause is unknown but mucosal injury can occur due to a variety of things such as shock, perinatal asphyxia, gastrointestinal infection, severe cardiopulmonary disease, and hyperosmolar feedings. Once mucosal injury occurs, bacterial invasion occurs and gas is formed. The incidence of NEC is lower in breast-fed infants but the reason for this is unknown. Treatment may require surgery.

NOSCOSOMIAL BACTEREMIA: (also nocosomial infection of bacterial sepsis) Infection acquired during

hospitalization Premature babies are highly susceptible to infection due to premature stress, immature immune systems, complicated medical and surgical problems, and the invasive techniques that are required for monitoring and treatment. Infection can be prevented by sanitation practices such as hand washing, skin and cord care, use of sterilized instruments, and by ensuring overall employee health. Treatment of

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infection in neonates can be achieved by the administration of antibiotics, which have significantly reduced mortality rates.

NPO (NOS PER OS): Latin phrase meaning “nothing given by mouth.” O OLIGOHYDRAMNIOS: When the amount of amniotic fluid surrounding the fetus is abnormally small. Usually

associated with retarded fetal growth and may indicate serious fetal kidney abnormalities. OMPHALITIS: Inflammation of the naval. OMPHALOCELE: An umbilical hernia. OPHTHALMIA: Inflammation of the eye. ORCHIDECTOMY: Removal of a testis, to treat a malignant tumor. ORCHIOPEXY: Operation involving the mobilization of an undescended testis in the groin & fixing it in the scrotum. OSTEOMYLETIS: Inflammation of the bone marrow due to infection. P PATENT DUCTUS ARTERIOSUS (PDA): A condition in which the ductus arteriosus remains open when it would

normally be closed. PERICARDIAL CENTESIS: Needle aspiration of the heart to get the fluid out. PERICARDIAL TUBE: Putting a tube into the heart to get the fluid out. PERINATAL: Relating to the period from about three months before to one month after birth. PETECHIAE: A small red spot caused by bleeding into the skin or beneath the mucous membranes. PLACENTAE ABRUPTIO: The placenta separates from the uteral lining earlier than normal, resulting in pain and

bleeding. Often associated with preclampsia. A live fetus would be born by C/S. PLETHORA: An excess of any bodily fluid, especially blood. PNEUMOTHORAX: Air in the plural cavity, causes the lung to collapse; treatment is by letting the air out by surgical

incision. PO (PER OS): Latin phrase meaning “by mouth.” PO2 OR PAO2: Partial pressure of oxygen in arterial blood. This is a measure of the oxygen that can be delivered to

tissues, and should be between 50 and 100mm of mercury. PYLORIC STENOSIS: Narrowing of the muscular outlet of the stomach, delays passage of stomach contents to

duodenum. Symptoms: repeated vomiting, weight loss, dehydration & alkalosis. Treatment: Pyloromyotomy: surgery in which the pylorus muscle is divided down to the mucosa.

Pyloroplasty: surgery in which the pylorus is widened by reconstruction R RESPIRATORY DISTRESS SYNDROME (RDS): Also known as Idiopathic Respiratory Distress Syndrome (IRDS) or

Hyaline Membrane Disease (HMD). Immature lungs may be unable to remain aerated when the baby breathes out. The increased respiratory effort causes liquid to enter the air spaces, and impairs ventilation. Under the microscope, it looks like a membrane (hence the name). Severely affected infants require ventilators to help keep air in the lungs.

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RETINOPATHY OF PREMATURITY (ROP): (also called Retrolental Fibroplasia). Injury to the retina of the eye. Retinal

damage occurs due to prematurity and/or oxygen administration. The result is an abnormal mass of scar tissue that forms in the eyes of premature infants. It may be very mild and of little significance, or it may be of such an extent that it displaces the retina of the eye and causes blindness.

S STENOSIS: see ‘atresia’ STOMA: The mouth (anatomy); the artificial opening of a tube, i.e. colo- or ileostomy (surgical). SUPERNUMERARY: Greater than the normal number; accessory. SURFACTANT: The surface active material that lines the airspaces of the lung to prevent their closure. Surfactant is

responsible for lowering the surface tension so that the alveoli can expand. If there is no surfactant, the alveoli will collapse. Premature infants can be induced to produce surfactant with antenatal steroids during labour, or artificial surfactant can be squirted into the lungs through a tube.

T TACHYCARDIA: Rapid heart rate. TACHYPNEA: Rapid breathing. TENTORIUM: An infolded sheet of dura matter separating the cerebellum from the occipital lobes. THORACENTISIS: Needle aspiration of the lungs. TRACHEOTOMY (TRACHEOSTOMY): A hole is made into the trachea through the neck to relieve obstruction to

breathing. Often used in conjunction w/ artificial respiration, serving to secure the airway & providing a route for sucking out secretions.

TRANSIENT TACHYPNEA OF THE NEWBORN (TTN): see ‘wet lung’. U UA LINE: Umbilical artery catheter to permit sampling of baby’s blood and to measure blood pressure. URTICARIA: An acute or chronic allergic reaction in which red, round wheals develop on the skin. V VACTERL SYNDROME: Abnormalities of vertebrae, anus, cardiovascular tree, trachea, esophagus, renal system, and

limb buds associated with the administration of sex steroids during early pregnancy. VENTRICLES: The chambers of the heart and head. VITAL SIGNS: Temperature, pulse, respiratory rate, blood pressure. W WET LUNG: Refers to liquid in the lungs that has not resorbed as fast as expected after birth. This condition may also

be called transient tachypnea of the newborn, or TTN.

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APPENDIX X CANADIAN NEONATAL NETWORK SITES

Victoria General Hospital, Victoria* BC Children’s & Women’s Health Centre of BC, Vancouver* Royal Columbian Hospital, New Westminster*

Foothill’s Hospital, Calgary* Royal Alexandra Hospital, Edmonton* Regina Qu’Appelle Health Region (Regina General Hospital), Regina*

Royal University Hospital, Saskatoon* St. Boniface General Hospital, Winnipeg*

Winnipeg Health Sciences Centre, Winnipeg* Hamilton Health Sciences Centre, Hamilton*

St. Joseph’s Health Centre, London* Hospital for Sick Children, Toronto* Mount Sinai Hospital, Toronto* Sunnybrook & Women’s College Hospital, Toronto* Kingston General Hospital, Kingston* Children’s Hospital of Eastern Ontario, Ottawa* Hopital Sainte-Justine, Montréal* Jewish General Hospital, Montréal *

Montréal Children’s Hospital, Montréal Royal Victoria Hospital, Montréal Hôpital Maisonneuve-Rosemont, Montréal

St. Francois d’Assise Hôpital, Québec City Centre Hospitalier Universitaire de Québec, Sainte Foy Centre Hospitalier Universitaire de Sherbrooke, Sherbrooke

St. John Regional Hospital, St. John* Moncton Hospital, Moncton* Dr. Everett Chalmers Hospital, Fredericton IWK Health Centre, Halifax*

Janeway Child Health & Rehabilitation Centre, St. John’s*

*Sites currently active in data collection

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APPENDIX XI DATABASE SCREEN VIEWS

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