children's heart center annual report 2015

Heart Center2 014–2 015 ANNUAL RepoRt

the

Our mission yesterday, today and tomorrow is to make life better for children.

1

During the past year, The Heart Center at Children’s Health has strengthened its position as an international destination for complex pediatric cardiac care and transplantation. Our team of 25 cardiologists and three staff surgeons, along with more than 400 nurses, managers and support staff, are motivated by the trust that parents place in us to continuously pursue, discover and apply knowledge to take better care of their children.

The Heart Center offers a comprehensive program of specialized care for children with congenital and acquired heart diseases. A multidisciplinary group of specialists work together to meet the full range of pediatric cardiac needs, while also considering the needs of the family from both a medical and an emotional perspective.

The Heart Center’s focus on quality, innovation and outcomes has resulted in a number of notable accomplishments:

• The surgical team performs 565 operations and 358 open heart procedures annually, treating some of the most complex cases in the world, including hypoplastic left heart

syndrome and ABO-incompatible heart transplantation.

• More than 1,000 catheterizations are currently performed annually, including very innovative approaches of cardiac catheterization laboratory equipment. The newest cardiac MRI scanners are available for pediatric cardiac patients in close proximity to the cardiothoracic OR and the Intensive Care Unit. This arrangement allows the performance of complex procedures with the lowest possible radiation exposure and the highest level of patient safety, resulting in the best possible outcome for patients.

• The Heart Center offers the only pediatric ventricular assist device program in North Texas, an aggressive approach that bridges patients to an eventual transplant.

• The Cardiac Intensive Care Unit in The Heart Center is the largest dedicated pediatric CICU in Texas, with 32 beds.

A vital component of our program at The Heart Center is our commitment to provide detailed cardiac education and support

services for our patients and their families. Equally important is our commitment to sharing our practices for use as educational tools for other cardiothoracic surgeons and cardiology professionals.

We hope you find the information in this report useful and informative. Even as we reflect on a year of progress and growth, we are continuing to raise the bar for ourselves, to ensure we remain focused on our mission – to make life better for children.

Sincerely,

David BiggerstaffPresident, System Clinical OperationsChildren’s Health System of Texas

I’m pleased to present the 2014-2015 Annual Report for The Heart Center at Children’s HealthSM. Physicians in The Heart Center hold faculty appointments at UT Southwestern Medical Center

— one of the leading medical education and biomedical research institutions in the country. This affiliation grants our patients access to clinical expertise and resources that bring to bear superior clinical outcomes.

2

Letter to Colleagues from Co-Directors

We are pleased to share with you the exceptional patient outcomes we are achieving at Children’s Medical Center Dallas. Together with the physician faculty, staff and the research

facilities at UT Southwestern, one of the world’s most renowned research institutions, we are able to provide medical care, research and teaching according to the highest national and international standards. We are the flagship hospital of Children’s HealthSM – the only academic health care system in North Texas dedicated exclusively to the comprehensive care of children.

Our dedication to delivering world-class pediatric cardiac care was recognized this year by the Society of Thoracic Surgeons with its prestigious three-star (highest possible) rating. This distinction places us among an elite group of only six pediatric programs nationwide.

We draw inspiration from the courage of our patients, as well as the trust their families place in our capabilities. From our outreach clinics to our state-of-the-art Heart Center at the Children’s Medical Center Dallas, we give our patients care that is truly second to none. Our Annual Report describes how we are doing just that.

Joseph Forbess, M.D.Division Director, Cardiothoracic Surgery Co-Director, The Heart CenterProfessor of Thoracic and Cardiovascular SurgeryPogue Distinguished Chair in Pediatric Cardiac Surgery Research UT Southwestern Medical Center

Dear Colleagues,

F. Gerald Greil, M.D., Ph.D.Division Chief, Pediatric CardiologyCo-Director, The Heart CenterProfessor of PediatricsPogue Family Distinguished Chair in Pediatric Cardiology UT Southwestern Medical Center

3

4 Mission Statement

4 Academic Affiliation

5 Updated Heart Center Space

7 The Heart Center Overview

8 Surgical Outcomes

25 Cardiovascular Surgery

26 Adult Congenital Heart Disease

27 Anesthesia

28 Nursing Highlights

30 Cardiology

32 Catheterization and Intervention

34 Imaging

35 Electrophysiology

36 Cardiac Intensive Care Unit

38 Cardiothoracic Surgery

40 Heart Failure/Ventricular Assist Device

42 Heart Transplant

45 Fetal Heart

46 Neurodevelopment

48 Prevention and Screening

50 Patient Stories

64 Safe at Home

65 HeartGift Foundation

66 Outreach Clinics

67 Meet Our Team

68 Research and Clinical Trials

Table of Contents

Table of Contents

4 Mission Statement

Academic Affiliation

S ince 1961, Children’s Medical Center has been the primary pediatric clinical partner for UT Southwestern Medical School (UT Southwestern) – one of the leading medical education and biomedical research

institutions in the country.

In addition to extending our academic mission of teaching the next generation of doctors and advancing patient care through quality and research, this partnership affords our patients access to world-renowned expertise in every aspect of pediatric cardiac care.

T he mission of Children’s Health has always been to make life better for children. Our beginnings in 1913 were humble, but even then our vision was big. Today our team takes great pride in being one of the largest

pediatric health care providers in the country and the only academically affiliated pediatric hospital in the Dallas area.

Throughout our history, whether treating common pediatric conditions or giving lifesaving care, the heart of Children’s Health is our people. Our unique skills and experience, combined with the latest techniques and technology, allow us to provide the most comprehensive health care available. These attributes help us achieve our vision of making Children’s Health among the very best medical centers in the nation.

Our mission yesterday, today and tomorrow is to make life better for children. It’s a promise that we keep with no expiration date. We believe there is no better affirmation of our mission than seeing happy, healthy patients leave the hospital.

Mission Statement and Academic Affiliation

5Updated Heart Center Space

Updated Heart Center Space

All cardiac subspecialties act as a team to provide optimal care for each patient, from prenatal care to adulthood. Based on this idea, Children’s Medical Center Dallas offers a world-class facility that is home to exceptional care and innovation. The culmination of a multi-year, $76 million expansion plan, this investment bolsters our ability to deliver high-quality patient care with the utmost efficiency.

Recent updates include:•New catheterization and magnetic

resonance imaging (MRI) capabilities: Our new catheterization lab enables 3-D imaging and MRI overlay. These features give us a level of unprecedented precision in diagnosis, procedure planning and delivery. Our MRI and cardiac catheterization laboratories are in close proximity, allowing both procedures to be performed under one general anesthetic to obtain optimal t’s scary on something this biginformation and minimize radiation for the patient.

•Technology that lowers X-ray radiation levels: New flat-panel technology in the catheterization labs uses less energy to produce radiation beams, with less scatter. This advancement produces crisp, accurate imaging while protecting patients and staff

from unnecessary radiation exposure. •One-stop cardiac care: Encompassing

nearly 130,000 square feet, our center allows all of our departments to be centrally located, including heart transplant, imaging suites, procedure rooms, clinics and labs. Complex diagnostic and interventional procedures can be performed under one general anesthetic if necessary.

•Expanded outpatient facilities: The opening of a new clinic within The Heart Center’s main campus brought five new exam rooms (for a total of 12) and four new echocardiography rooms (for a total of eight). The space also includes dedicated phlebotomy services, which allows patients to have labs drawn without leaving their exam room.

•Dedicated conference space: Our spacious new area includes video conferencing equipment and allows for more efficient collaboration with outside referral centers.

These updates augment features and capabilities launched in 2014, which included: • Increased cardiac intensive care

unit (CICU) capacity: Our dedicated CICU expanded from 20 to 32 beds,

making it one of the largest in the nation.

•Unveiling the Artis Q.zen Biplane Catheterization Lab: Q.zen technology utilizes ultra-low doses of radiation to produce superior images, and Children’s Medical Center Dallas was the first hospital in the Southern United States to have it.

• Implementing the latest Philips Ingenia 1.5T MRI system: Children’s Medical Center Dallas is one of the few centers in the country with a scanner dedicated exclusively to cardiac patients. Having this system adjacent to the interventional cardiac catheterization suite supports a seamless combination of both technologies to reduce radiation and to obtain optimal imaging results for planning even the most complex procedures with the best patient outcomes.

•Unique conferencing capabilities and remote access to patient data: Sophisticated audio-visual capabilities (STORZ system) throughout The Heart Center space facilitate collaboration and access to critical resources whenever necessary.

5

6

The Heart Center Overview

7The Heart Center Overview

Providing a continuum of care for patients from birth to adulthood, The Heart Center at Children’s Health is an international destination for children with acquired and congenital heart disease.

Highlights of our program include: •World-class pediatric subspecialists: Our success is the

result of a close collaboration with UT Southwestern. This partnership enhances the integration of internationally recognized pediatric cardiac subspecialty care with all other pediatric specialists at Children’s Health.

•National ranking: For seven consecutive years, U.S. News & World Report has recognized Children’s Health as one of the top pediatric hospitals in the country. We also rank among the top 20 pediatric cardiology and heart surgery programs in the nation.

•Leadership: The Heart Center clinicians are highly respected in academic and professional communities. They serve as editors of peer-reviewed journals, lead prestigious multi-center clinical trials and have been founding members of national and international subspecialty societies.

•Research: The Heart Center physicians conduct leading-edge research. These efforts are advancing the science of pediatric cardiac care while uncovering novel approaches to rare and complex conditions.

•Family-centered care: Consistent with our belief that engaged families lead to better care, we partner with parents to personalize each child’s care. Listening to feedback from our Patient Advisory Council has led to changes in our clinical practices that have improved the family experience.

The Heart Center Overview

8

Surgical Outcomes

Surgical Procedures 2014Cardiac Operations 518 total

565ACHD Operations 30

Heart Transplants 17

Cardiac Catheterization Procedures 2014Interventional Cardiac Caths 451

total

1,187Biopsy Cardiac Caths 255

Diagnostic 251

EP Studies & Procedures 203

Pacemaker & Defibrillator Implants 18

Loop Recorders 9

Outpatient Clinic Patient Encounters 2014Dallas 7,779

total

11,681Plano 2,754

Outreach1 766

Southlake 356

Presby-Dallas 26

Inpatient Cardiology 2014

CICU Total Patient Days 6,445 total

12,709General Cardiology Total Patient Days 6,264

Diagnostic Testing & Cardiac Imaging 2014Electrocardiograms 16,892

total

30,110ECHO 11,650

Holters 926

Fetal ECHO 403

Cardiac MRIs 147

Stress Tests 92

Surgical Outcomes

Cardiovascular Anesthesia 2014Cath Lab 803

total

1,588Cardiovascular Operating Room 486

Cardiac MRI 60

Cardiac ICU 91

Cardiac Anethesia in Non Cardiac Locations 148

1 Outreach Clinics: Abilene, Tyler, Odessa and Midland

9

Surgical Volumes

Surgical Volumes

2005

2006

2007

2008

2009

2010

2011

2012

2013

2014

321107

365105

328129

374141

346148

352126

336123

335127

389149

358145

Total Cardiopulmonary Bypass (CPB) vs. Non CPB Cases (volume by year)

PMS 032C

Total CPB Non CPB

Surgical Outcomes

10

Surgical Outcomes

11

Surgical Outcomes

2008

2009

2010

2011

2012

2013

2014

18292

19416

15211717512

16696

19218

14495

16919

16210915325

15611020525

15219918430

Number of Cardiovascular (CV) and Thoracic Surgical Cases (volume by year)

Neonate Infant Child Adult

12

Surgical Outcomes

Primary ProcedureNumber of Procedures

Number of Operative Mortalities

% MortalitySTS National Benchmark

STAT CATegory 1 421 1 0.2% 0.6%

STAT CATegory 2 458 9 2.0% 1.6%

STAT CATegory 3 138 1 0.7% 2.8%

STAT CATegory 4 350 20 5.7% 7.2%

STAT CATegory 5 63 4 6.3% 16.0%

Total 1,430 35 2.4% 3.3%

Primary ProcedureNumber of Procedures

Number of Operative Mortalities

% MortalitySTS National Benchmark

STAT CATegory 1 125 0 0.0% 0.5%

STAT CATegory 2 123 5 4.1% 1.7%

STAT CATegory 3 37 0 0.0% 2.6%

STAT CATegory 4 81 6 7.4% 6.0%

STAT CATegory 5 11 1 9.1% 13.8%

Total 377 12 3.3% 2.9%

1 STS Congenital Heart Surgery National Report Published June 2015, reporting time frame Jan 2011-Dec 2014, Table 16, pg. 58 2 STS Congenital Heart Surgery National Report Published June 2015, reporting time frame Jan 2011-Dec 2014, Table 1, pg. 1

Mortality by STAT Classification1

January 2011 – December 2014

Mortality by STAT Classification2

2014

13

STAT Mortalities by Age and Operation Type1

2014

Category 1 Category 2 Category 3 Category 4 Category 5

Mortalities Procedures %STS National Benchmark





NeoNATe (0 - 30d) 0 2 0 3.5 2 8 25 3.6 0 8 0 3.5 4 35 11.4 7.9 1 10 10 14.9

INfANT (31d - 1y) 0 47 0 0.8 0 39 0 2.3 0 21 0 2.7 1 31 3.2 6.1 0 1 0 8.9

ChIld (1y - 18y) 0 67 0 0.2 3 61 4.9 0.9 0 7 0 1.8 1 15 6.7 2.9 0 0 0 4.7

AdulT (18y +) 0 9 0 0.4 0 15 0 0.9 0 1 0 4.2 0 0 0 3.4 0 0 0 0

Overall Mortality2

STS National Benchmark

0%<1%

2005200620072008200920102011201220132014

19342735152028242631

Atrial Septal Defect (ASD) Repairs primary procedure (volume by year)

PMS 032C

Surgical Outcomes 1 STS Congenital Heart Surgery National Report Published June 2015, reporting time frame Jan 2011-Dec 2014, Table 7, pg. 48-492 STS Congenital Heart Surgery National Report Published June 2015, reporting time frame Jan 2011-Dec 2014, Table 5, page 26

14

2005200620072008200920102011201220132014

43354651424337333836

Ventricular Septal Defect (VSD) Repairs primary procedure (volume by year)

PMS 032C

Surgical Outcomes

Overall Mortality 1 Post Operative Median Length of Stay

STS National Benchmark National Benchmark

0% 5 days0.7% 7.7 days

1 STS Congenital Heart Surgery National Report Published June 2015, reporting time frame Jan 2011-Dec 2014, Table 18, pg. 63

15

Surgical Outcomes

16

Surgical Outcomes

2005200620072008200920102011201220132014

14121323281318182316

Atrioventricular Canal (AVC) Repairs primary procedure (volume by year)

PMS 032C

Operative Mortality 1 Incident of Arrhythmia Requiring Permanent Pacemaker

Post Operative Median Length of Stay

STS National Benchmark STS National BenchmarkSTS National Benchmark

0% 0%9 days3.2% 2.7%15.5 days


17

Surgical Outcomes

2005200620072008200920102011201220132014

14311920252720302212

Tetralogy of Fallot (TOF) Repairs primary procedure (volume by year)

PMS 032C

Overall Mortality 1 Post Operative Median Length of Stay

Incidence of Transannular Patch 2

STS National Benchmark STS National Benchmark STS National Benchmark

1.4% 6.5 days 21.4%1% 11 days 46.3%

1 STS Congenital Heart Surgery National Report Published June 2015, reporting time frame Jan 2011-Dec 2014, Table 18, pg. 63 2 STS Congenital Heart Surgery National Report Published June 2015, reporting time frame Jan 2011-Dec 2014, Table 24, pg. 87

18

Surgical Outcomes

19

Overall Mortality1


3.4%2.7%

Post Operative Median Length of Stay ASO


10 days15.4 days

Post Operative Median Length of Stay ASO+VSD


5.3%

Post Operative Median Length of Stay ASO+VSD


10.5 days11 days

Surgical Outcomes 1 STS Congenital Heart Surgery National Report Published June 2015, reporting time frame Jan 2011-Dec 2014, Table 18, pg. 63

2005200620072008200920102011201220132014

9151517241613171213

Arterial Switch Operations (ASO) primary procedure (volume by year)

0%

20

2005200620072008200920102011201220132014

13231216142215192516

Norwood Operations primary procedure (volume by year)

PMS 032C

1 STS Congenital Heart Surgery National Report Published June 2015, reporting time frame Jan 2011-Dec 2014, Table 18, pg. 63 Surgical Outcomes

Operative Mortality 1 Post Operative Median Length of Stay


3.7% 32.5 days15.6% 41 days

21

Overall Mortality1


0%0.2%

PMS 032C

200520062007200820092010201120122013

899

1366

1086

Total Pulmonary Valve (PV) Replacements (volume by year)

2014 4


Surgical Outcomes

22

2005200620072008200920102011201220132014

19261623322428171414

Glenn/HemiFontan Operation primary procedure (volume by year)

PMS 032C


Operative Mortality1 Post Operative Median Length of Stay


1.0% 8 days2.1% 12.4 days

23

2005200620072008200920102011201220132014

45252420211726172023

Fontan Operation primary procedure (volume by year)

PMS 032C



0% 9 days1.4% 14 days

Surgical Outcomes 1 STS Congenital Heart Surgery National Report Published June 2015, reporting time frame Jan 2011-Dec 2014, Table 18, pg. 63

24

2005200620072008200920102011201220132014

5424356572

Truncus Operation primary procedure (volume by year)

PMS 032C




0% 24 days9.6% 25.4 days

25Cardiovascular Surgery

Cardiovascular Surgery

Children’s Health was recently awarded a prestigious three-star (highest possible) rating from the Society of Thoracic Surgeons (STS). This designation places Children’s Health within an elite group representing the top 5% of hospitals in the nation. Children’s Health earned this distinction by having significantly lower-than-expected mortality rates based on the STS Congenital Heart Surgery Database mortality risk model.

From heart transplants to complex single ventricle defect repairs, Children’s Health performs almost 600 cardiovascular surgeries a year.

Highlights of our cardiovascular program include: • Completing the world’s first double switch procedure for

atrioventricular and ventriculoarterial discordance in a patient less than 1 week old

• Achieving higher-than-national-average volume for pulmonary valve-sparing Tetralogy of Fallot repairs

• Performing a high volume of Norwood procedures for hypoplastic left heart syndrome with morality rates that are significantly lower than expected (according to STS risk models)

The advanced care and world-renowned expertise at Children’s Health helps patients with rare and complex conditions achieve excellent outcomes.

26

Adult Congenital Heart Disease Program

Adult Congenital Heart Disease Program

Highlights of our program include:•Expertise: Children’s Health is one of the few pediatric

medical centers in the country with a team of experts specifically trained in adult congenital heart disease. We have a unique appreciation for the anatomical variances with which adults with congenital heart disease may present. This expertise helps us offer a precise diagnosis and meticulously plan any procedures that may be needed.

•Transition clinic: We have launched a formal clinic to help adolescent patients transition to adult care. A team of dedicated nurse practitioners, social workers and psychologists works with adolescent patients starting from age 16 to assess readiness, deliver education and facilitate a staged transition to the adult practice. We anticipate more than 50 patients will complete the transition process in the clinic’s first year of operation.

•Education: Six physicians at Children’s Health took the first-ever American Board of Internal Medicine subspecialty certificate in adult congenital heart disease.

•Age-appropriate care and support: Children’s Health provides care to adults with the help of adult-sized equipment in our catheterization labs and operating rooms, as well as adult-specific protocols. Many of the nurses in our program have adult CICU experience and maintain adult-specific cardiac life support training.

•Whole-person care: We advise adult patients on optimal self-care and lifestyle practices, in addition to offering consultative services to minimize cardiac-related complications during non-cardiac procedures.

C hildren’s Health was one of the first in the country to offer dedicated care and services meeting the lifelong needs of adults with congenital heart disease.

Our affiliation with UT Southwestern gives patients access to world-class care at Children’s Medical Center Dallas, Parkland Memorial Hospital and William P. Clements Jr. University Hospital, depending on their medical needs and personal preferences.

27Anesthesia

Anesthesia

Highlights of our anesthesia program include: •Seamless care: Children’s Medical Center Dallas is one of

the few hospitals in the country with a dedicated certified anesthesia assistant. This team member is responsible for providing consistency in patient care and ensuring operating room efficiencies.

•Coordinated approach to care: A certified physician assistant ensures seamless care through perioperative optimization, specialty consultation, risk stratification, case assignment and post operative monitoring.

•Comprehensive care: Cardiac anesthesiologists deliver specialized anesthesiology services to any child who has a heart condition and needs a cardiac procedure.

•Expert team: The team at Children’s Medical Center Dallas includes four board-certified pediatric cardiac anesthesiologists, each with 10 or more years of experience.

•Patient-centered care: We have a deep understanding of even the most complex heart conditions and put a plan in place to accommodate each patient’s needs before procedures are scheduled.

A dedicated team of pediatric cardiac anesthesiologists assured specialized care, efficiency and coordination during more than 1,500 encounters in 2014 alone. Cardiac anesthesiologists

at Children’s Health are available round the clock and care for patients in the operating suite, catheterization lab, intensive care unit and imaging suites.

28

Highlights of our 2015 accomplishments include:•Improve the Move Initiative: Based on feedback from our

Patient Advisory Council, nurses spearheaded an effort to make patient transitions from the CICU to acute care more family-friendly. This effort included instructional videos and individualized patient education to reduce the stress and anxiety associated with care transitions.

•Developing quality improvement projects: Our advance practice group developed a feeding algorithm for all infants with congenital heart disease as part of a care pathway for decreasing feeding intolerance.

•Bi-weekly case conferences: To ensure our patients receive family-centered care that meets all their needs, the nursing team implemented bi-weekly case conferences. In addition to daily rounds, case conferences provide an opportunity for parents and clinicians to talk openly about a child’s progress and plan the next steps in care.

•Personalized care for implantable device patients: Children’s Medical Center Dallas nurses provide patient education and also interrogate pacemakers and implantable cardio defibrillators (ICDs). Many parents have peace of mind knowing their child is receiving full-spectrum care from a clinical team they know and trust.

Nursing Highlights

Nursing Highlights

S pecialized nursing and innovation are points of pride in our cardiac program. Children’s Medical Center Dallas is a recipient of the prestigious Magnet Recognition Program from the American

Nurses Credentialing Center. This designation represents the “gold standard” of nursing excellence and places us within an elite group representing less than 7% of hospitals across the country.

Children’s Medical Center Dallas nurses maintain the highest levels of competence and receive ongoing pediatric cardiac education. Our team also includes many advanced practice nurses who carry their own patient load and function as autonomous members of the clinical team.

29

Nursing Highlights

30

The conditions we treat include: • Advanced heart failure• Aortic stenosis • Arrhythmia• Atrial septal defect • Atrioventricular canal defect • Bacterial endocarditis • Bicuspid aortic valve• Brugada syndrome • Cardiomyopathy• Chest pain• Coarctation of the aorta• Congenital heart disease• Congestive heart failure• Coronary artery anomalies• Dextro-transposition of the great

arteries

• Double outlet left ventricle • Dyslipidemia• Ebstein’s anomaly• Eisenmenger syndrome• Heart failure• Hypoplastic left heart syndrome• Kawasaki disease• Levo-transposition of the

great arteries • Long QT syndrome• Marfan syndrome• Mitral stenosis • Myocarditis• Partial anomalous pulmonary

venous connection • Patent ductus arteriosus• Patent foramen ovale

• Pericarditis• Pulmonary atresia• Pulmonary hypertension• Pulmonary stenosis• Scimitar syndrome • Shone’s anomaly• Single ventricle defects• Sudden death• Syncope• Tetralogy of Fallot• Total anomalous pulmonary

venous return• Transposition of the great arteries• Tricuspid atresia• Truncus arteriosus• Wolff-Parkinson-White syndrome• Ventricular septal defect

Cardiology

Cardiology

Pediatric cardiac subspecialists at Children’s Health offer expert evaluation and ongoing care for patients with a wide range of acquired and congenital heart conditions. We provide early

intervention and deliver comprehensive treatments and support that improves our patients’ quality of life.

Admission Volumes: Total Patient Days

6,264CPR Event Rate

0.02 PER100 pt days

31

Cardiology

32

P erforming more than 900 cases in 2014 alone, Children’s Health offers one of the largest pediatric catheterization programs in the country. Interventionalists at Children’s Health are internationally

renowned for their expertise and innovation.

UT Southwestern physicians practicing at Children’s Medical Center Dallas were early adopters of ductal stenting and transcatheter valve insertion, which have now become the standard of care.

Catheterization and Intervention


33

Our program is on the leading edge of pediatric percutaneous interventions:

• We recently acquired funding from the National Institutes of Health and American Heart Association to continue our work in expandable and biodegradable stents.

• Children’s Medical Center Dallas is one of the few programs utilizing 3-D printing with magnetic resonance imaging to augment pre-procedural catheterization planning.

• We’re part of a multi-center cardiac catheterization intervention study consortium comparing the efficacy of patent ductus arteriosus stenting to surgery.


PMS 032C

2011201220132014

84

121337

Ductal Stenting for Pulmonary Flow (volume by year)

Total

34

Highlights of our imaging program include:•Expertise: Earlier this year we welcomed Gerald Greil,

M.D., a world-renowned cardiac imaging expert, as co-director of The Heart Center. Dr. Greil’s accomplishments include developing the first-ever 3-D replica of a child’s heart to teach cardiac specialists and to plan life-saving surgery. We also added new advanced imaging experts who specialize in research and congenital heart disease. All members of the team hold secondary appointments in Radiology (led by Prof. Neil Rofsky and Prof. Nancy Rollins), which allows them to use the unique clinical and research facilities at UT Southwestern.

•Advanced echo capabilities: We are the only hospital in North Texas certified in all methods of echocardiography. Our Intersocietal Accreditation Commission-certified echo suite includes special areas for fetal echo, as well as a complete noninvasive monitoring laboratory. We offer advanced echo testing, including stress echoes and special testing for fetal heart conditions.

•Seamless care experience: All cardiac imaging facilities at Children’s Medical Center Dallas are in close proximity to procedure rooms. This arrangement supports intra- and perioperative assessment of surgical and cardiac catheterization procedures.

•Child-centered care: Accuracy is one of our top priorities. We use techniques developed through years of experience and specialized training to get the best images – even in very young patients and those who have a hard time sitting still.

Imaging

Imaging

Performing more than 30,000 imaging studies in 2014 alone, Children’s Health is a nationally recognized imaging leader. In addition to using the most sophisticated cardiac techniques and

technologies, we’re advancing the science of pediatric cardiac imaging.

Our expertise extends beyond image interpretation, as we skillfully assimilate imaging into clinical practice. This approach helps our patients receive the best care possible.

35

Highlights of our program include:•Round-the-clock access: Advanced technology

(STORZ system) throughout The Heart Center makes it possible for electrophysiologists to access real-time electrocardiogram readings from anywhere in the building and via secure remote access. This system makes it possible to provide consultations any hour of the day or night.

•Best-available devices: Our role as an established testing center gives patients access to the best-available pacemakers and implantable cardio defibrillators.

•Innovative treatments and excellent outcomes: We perform about 80 ablation procedures per year, regularly maintaining a 90% success rate and a complication rate of less than 1%. Our success is due in part to advanced imaging capabilities, which allow us to use a CT scan with MRI overlay. This approach helps us map out anatomical structures in children with complex cardiac anatomy.

•Appropriate care: Children’s Medical Center Dallas offers one of the largest device programs in the country. More importantly, our patients receive appropriate care. Thanks to our nationally ranked cardiothoracic surgery program, it’s rare for one of our patients to need a pacemaker as the result of a surgical complication. Instead, most of the children who receive devices have arrhythmias that did not respond well to other treatments.

•Leadership: As active members of national and international professional societies, electrophysiologists at Children’s Medical Center Dallas are advancing pediatric arrhythmia care. We participate in committees and collaborations through the Heart Rhythm Society and other prestigious professional organizations.

•Referral center: Cardiologists from North Texas and surrounding communities put their trust in the expertise at Children’s Medical Center Dallas by frequently referring patients to our program. We’re happy to collaborate with outside physicians to ensure a seamless care experience.

Electrophysiology

Electrophysiology

We are the only children’s hospital in North Texas giving patients access to the world-renowned pediatric cardiac subspecialists at UT Southwestern.

That relationship means we offer expert diagnosis and every available treatment for arrhythmias. Our expertise spans all forms of arrhythmia, including rare conditions such as Wolff-Parkinson-White syndrome.

36

W hen critically ill children come to Children’s Medical Center Dallas, they are the focus of

a distinguished and expert cardiac intensive care team. As the largest dedicated CICU in Texas, our 32-bed unit provides life-saving care to children with advanced forms of acquired and congenital heart disease.

Highlights of our program include:•Technology: Sophisticated audio-visual capabilities (STORZ

system) allow the CICU team to monitor patients from anywhere in The Heart Center. This technology helped Children’s Health earn a spot on the U.S. News & World Report Most Connected Hospitals 2015-2016 list.

•Clinical support: As the only program in North Texas with dedicated pediatric electrophysiologists, Children’s Medical Center Dallas is uniquely positioned to provide up-to-the-minute post-surgical care. Round-the-clock electrophysiology backup in our CICU is part of what allows surgeries at Children’s Health to be so successful.

•Nursing: CICU nurses participate in committees for international professional forums, such as the Pediatric Cardiac Intensive Care Society.

•Parent engagement: The CICU team’s unwavering dedication to family-centered care has been instrumental in our ability to deliver quality care. We include parents in daily rounds and conduct nursing shift change reporting at the patient’s bedside. These efforts helped us achieve exemplary scores for parent involvement on our most recent patient experience of care survey.

Cardiac Intensive Care Unit

Cardiac Intensive Care Unit Ventilator Weaning Protocol

Average intubation time dropped from

CICU stay decreased from

Average hospital stay decreased from

2014: Mechanical Circulatory Support within 24 hours of CPB/No CPB case

1.6 to 0.9

8.7 to 5.5

18.9 to12.4

2 in 503

DAyS

DAyS

DAyS

CASES

Rate = 0.40 per 100 CPB/No CPB Cases

DAyS

DAyS

DAyS

37

200520062007200820092010201120122013

142717241815202825

CICU ECMO (volume by year)

2014 24

Cardiac Intensive Care Unit

38

• We perform approximately 17 to 25 Norwood procedures a year with a surgical mortality rate over the past four years of 3.7%1. These are the best results in Texas; far below the national mortality rate of 15.6%2.

• Patients undergoing repair for tetralogy of Fallot are twice as likely to undergo a valve-sparing primary repair compared to the national average.

As the only hospital in North Texas offering the complete range of surgical treatments for pediatric heart disease, our large team of cardiac specialists and advanced practice nurses has years of experience delivering expert surgical care to even the smallest and sickest patients.

With in-house experts in all aspects of pediatric heart disease, Children’s Medical Center Dallas meticulously plans, coordinates and delivers surgical interventions:•Heart transplant: As one of the largest pediatric heart

transplant programs in the country, few other programs can match the depth and breadth of experience at Children’s Medical Center Dallas. Surgeons from The Heart Center also perform multi-organ transplants, including the world’s youngest heart-liver recipient.

•Heart devices: Offering a comprehensive range of devices, including pioneering work to develop new technologies for smaller children, Children’s Medical Center Dallas ranks among the best pediatric VAD programs in the country. This program also features a designated extracorporeal membrane oxygenation (ECMO) team capable of running up to six circuits at any time.

•Adult congenital heart disease: Experts at Children’s Medical Center Dallas are equally as comfortable performing surgery on adult patients as they are children. From revising previous repairs to treating patients with complex comorbidities, Children’s Medical Center Dallas delivers a range of adult surgical interventions.

Nearly

600operations performed annually

Cardiothoracic Surgery

The surgical team at The Heart Center performs nearly 600 operations and nearly 400 open-heart procedures annually. Outcomes for highly complex heart defects are as good as and in some

cases better than some of the best programs in the country.

Cardiothoracic Surgery 1 STS Congenital Heart Surgery National Report Published June 2015, reporting time frame Jan 2011-Dec 2014, Table 18, pg. 632 STS Congenital Heart Surgery National Report Published June 2015, reporting time frame Jan 2011-Dec 2014, Table 18, pg. 63

39

•Hybrid procedures: Working closely with interventional cardiologists, surgeons perform innovative hybrid procedures such as bilateral pulmonary artery banding. Children’s Medical Center Dallas was the first in the U.S. offering this technique as a method to stabilize critically ill newborn patients prior to conventional repair or palliation. It has since become a widely accepted practice.

•Routine procedures: With state-of-the-art rooms, dedicated pediatric cardiac anesthesiologists and a level of expertise that is only available at high volume centers, Children’s Medical Center Dallas delivers exceptional care even for routine procedures such as atrial septal defect closure.

Cardiothoracic Surgery

20092010201120122013

2629211735

2014 24

Single Ventricle Palliation/Norwood Cases (volume by year)

40 Heart Failure/Ventricular Assist Device

Heart Failure/Ventricular Assist Device

As one of only two pediatric ventricular assist device (VAD) programs in Texas, and the only one in North Texas, Children’s Medical Center Dallas offers programs capable of caring for children with

end-stage heart failure.

Cardiologists practicing at Children’s Medical Center Dallas are part of an international panel of experts who recently published VAD clinical guidelines in the Journal of the American College of Cardiology. We also lead pioneering efforts that are making VADs available to younger and smaller patients.

We offer a comprehensive range of devices, including:• Intra-aortic balloon pumps (IABPs)• HeartWare HVAD® System• Thoratec HeartMate II® Left Ventricular Device System• Berlin Heart® EXCOR Pediatric Ventricular Assist Device• Impella® 2.5 System• SynCardia 50cc Total Artificial Heart

Part of what differentiates our program is that all VAD patients receive specialized care from a dedicated nurse while they await a heart transplant. Working closely with surgeons, the CICU team and other nurses, this team member is responsible for ensuring care continuity, managing anticoagulation therapies and troubleshooting mechanical issues if necessary.

PMS 032C

VAD Implementations (volume by device)

Berlin

17

Impella

3

Thoratec

8

SynCardia

1

Intra-Aortic Balloon Pump

1 HeartWare

5Total Cases

35Patients bridged to recovery

2Patients to transplant

24Patients deceased

9

VAD Implantations (volume by device)

Heart Failure/Ventricular Assist Device

41

42

Not only is Children’s Medical Center Dallas the sole pediatric heart transplant facility in North Texas, we also consistently rank among the top 15 busiest programs in the country.

With one-year survival rates that exceed Scientific Registry of Transplant Recipients standards (SRTR), Children’s Medical Center Dallas achieves some of the best heart transplant outcomes in the state.

Children’s Medical Center Dallas is one of 52 programs worldwide, and one of only two in Texas, participating in the Pediatric Heart Transplant Study. Through this effort, we are improving pre- and post-heart transplant care in children.

In addition to performing 17 transplants in 2014, we also completed our program’s 200th case. Children’s Medical Center Dallas offers the full range of treatments, including VADs as a bridge to transplant, the SynCardia Total Artificial Heart and ABO-incompatible transplants.

Children’s Medical Center Dallas offers a comprehensive range of heart transplant services:•SynCardiaTotalArtificialHeart:Offering the only complete

heart replacement device approved by the FDA, Children’s Medical Center Dallas is a SynCardia-certified center.

•Traditional transplant: Children’s Medical Center Dallas ranks among the top 15 programs in the country in terms of transplant volume. As a referral center, we deliver exceptional care to children from all over Texas and the surrounding states.

•Re-transplantation: Since it is not uncommon for children to require subsequent heart replacements, our expertise also includes re-transplantation procedures.

•ABO-incompatible heart transplantation: Children’s Medical Center Dallas is one of very few centers in the country offering ABO-incompatible heart transplants.

Heart Transplant

Number of Heart Transplants Since Beginning of Program

214

2005200620072008200920102011201220132014

69

18111613

9171317

Heart Transplants (volume by year)

PMS 032C

Heart Transplant

43

Heart Transplant

Obs (%) Exp (%) N= National Observed

JuNe 2015 SrTr 1 month 100.00 97.21 38 97.06

1 year 100.00 93.02 38 92.87

3 year 73.08 87.55 26 86.32

Obs (%) Exp (%) N= National Observed

JuNe 2015 SrTr 1 month 100.00 97.21 42 97.09

1 year 100.00 92.65 42 92.62

3 year 73.08 86.26 26 84.23

Survival Statistics - Patient*

Survival Statistics - Graft*

*Data compiled from the June 2015 Scientific Registry of Transplant Recipients Program Specific Report

44

Fetal Heart

45

Children’s Health is the only hospital in the nation – pediatric or adult – to have earned disease-specific certification for fetal cardiac monitoring from The Joint Commission. This accolade

demonstrates our commitment to using evidenced-based clinical care practices.

As one of only two such programs in Texas, the Fetal Heart Program at Children’s Health expertly coordinates prenatal testing and high-risk delivery planning to ensure babies with critical congenital heart conditions get the care they need at precisely the right time. We received 498 referrals for fetal heart consultations in 2015.

Using advanced echocardiography techniques, dedicated fetal heart experts diagnose conditions with a high degree of accuracy. Our program maintained a 97% correct correlation of prenatal and postnatal echo studies in 2015.

Children’s Health Fetal Heart ProgramWorking with subspecialists from UT Southwestern, Children’s Health plans safe deliveries and coordinates services to help ensure infants receive high-acuity care starting from the moment they are born:•Birth Plan: Working within the risks and limitations of a

child’s condition, Children’s Health assists in identifying the most appropriate hospital for a family to deliver their baby, supporting delivery at a family’s preferred community hospital whenever possible.

•Patient Education: Helping parents understand their child’s condition and explaining what to expect helps parents feel comfortable and take an active role in making decisions about their unborn child’s care.

•Care Coordination: Cardiac nurse coordinators help families transition their child’s care to The Heart Center team after birth, with a special focus on finding the right cardiologist to meet their child’s unique needs.

•Support: We connect parents with much-needed support and resources through the help of dedicated social workers.

Fetal Heart

Fetal Heart

Only fetal program to have Joint Commission:

Disease-Specific Certification in Fetal Cardiac Monitoring

46

With mortality rates steadily decreasing over the past 25years, there has been greater focus on improving qualityof life among children with complex congenital heartdefects. In 2014, Children’s Health initiated a pilotneurodevelopment program to support the early identificationof developmental delays in children with hypoplastic leftheart syndrome. Early Diagnosis Is Key to Successful InterventionUsing a customized protocol, developmental assessmentsare conducted during a child’s stay in the CICU. Patients withidentified risks are then referred to the NeurodevelopmentClinic for a more comprehensive assessment.

One of few programs of its kind, the cardiac neurodevelopment program leverages the full complement of expertise and resources within Children’s Health, including:

• Speech therapy• Physical therapy• Occupational therapy• Cognitive therapy

Children’s Health has become the medical home for children with confirmed developmental delays in order to facilitate seamless coordination of clinical care, social supportand therapy services.

Specialty Support Clinics - Neurodevelopment

Specialty Support Clinics – Neurodevelopment

Specialty Support Clinics - Neurodevelopment

47

48 Specialty Support Clinics – Prevention and Screening

As one of the first preventive cardiology clinics in North Texas, Children’s Health has been caring for children with hypertension and hyperlipidemia for more than 20 years.

Part of what makes our program stand out is the flexibility with which we approach each case:

• Pediatric cardiologists skilled in explaining medical concepts using plain language and customized visual guides to help children understand and take ownership of their care

• Working within each family’s financial means to prescribe the most efficacious and cost-effective medications

• Listening to older children’s preferences and tailoring treatments accordingly

• Encouraging the best possible outcome for each child by setting realistic goals and accommodating patients’ changing needs

Comprehensive Early InterventionWe expertly treat children with acquired heart disease using tried and true methods and a customized approach for each patient.

This approach includes:• Evaluating new patients with a special focus on family

history and lifestyle • Working with Clinical Nutrition services to help children

and their families commit to dietary changes when necessary

• Long-term follow-up and monitoring until a child is old enough to transition to adult cardiology care

Specialty Support Clinics – Prevention and Screening

ANThONy hErmANMelody valve in 2010 to transplant in 2014.

Specialty Support Clinics – Prevention & Screening

49

50

Patient Stories

51

Patient Stories

Patient Stories

52 Adeline Prewett

Journey to a New HeartDouble-inlet left ventricle, hypoplastic right ventricle, transposition of the great arteries and coarctation of the aorta. It sounds like a whole lot, and it was, but it isn’t the end of the story. Actually, it is just the beginning of an admittedly long, admittedly trying, but thankfully continuing and happy journey.

Her name is Adeline Camille. She was born May 16, 2012. She loves her big sister and has a completely infectious laugh with a wee bit of orneriness mixed in. In her young life, she has faced two complicated open heart surgeries and numerous long nights in the hospital and come out on the other side with an enthusiasm that lights up a room. You may think, “How can one really think a baby ‘fights’ these things or ‘overcomes’ so much?” We know because we have seen it firsthand. And not only in Adeline, but also in other children that have heart defects. There is a fight and a drive in these kids. It comes from their loved ones and their caregivers. It comes from them.

Now, life is pretty normal for us and, most importantly, for Adeline. She has follow-ups with her cardiologist every six months to check her heart function and takes a couple of low-dose Asprin every day. I wish we kept count of the number of people who, when finding out about her heart history, remark,

“I never would have known.”

Patient Stories

53London Horkey

Patient Stories

Keeping a Steady Pace In January 2013 when I went to find out if our baby was a boy or girl, we found out she was a girl with half a heart. Her diagnosis was tricuspid atresia, severe coarctation of the aorta and double outlet right ventricle. We were completely devastated at how grim the diagnosis sounded coming from the doctors. We were referred to Children’s Health for a fetal echo and meeting with all the teams. They told us how they would attempt to fix what she has and about the program they will use interstage. We moved from Oklahoma City to a small condo close to Children’s Medical Center Dallas to entrust them with her only chance at life.

London Claire was born on June 5. She was pink and as perfect as an APGAR score could get. It was so shocking and hard to understand that she was very, very sick. She had her Norwood on day seven and had an extremely difficult recovery. We stayed in the ICU for eight weeks as she struggled to gain weight and learn to feed.

Interstage was extremely difficult for us, but our nurses and doctors completely carried us through. They will be there for all questions; they will stop at nothing to intercede for you. Do not fear you are in this alone or you have this child that totally relies on you. I know you’re feeling not sufficient for this kind of job. We were given the “close to death” conversations five times throughout our interstage. We had days that all seemed hopeless. London had her miracle Glenn procedure on Dec. 31. She excelled through that recovery and has been doing nothing short of excellent after that surgery.

She eventually started eating and drinking after many hours of hard work. She now acts like any other toddler and eats like any other toddler with no residual impairments. Every cardiology appointment has been fabulous. I hope she can give you hope through your hard days. Keep pushing through; there were days I didn’t know how I was breathing...but now it all was worth it.

5454 Josiah Bailey

Beating All OddsJosiah is our sweet, full-of-life, blonde-haired and blue-eyed little boy. His name means “Jehovah saves” – which did not truly resonate until our 23-week ultrasound when we found out that he had hypoplastic left heart syndrome. This news came three days before our big move from Nebraska to Texas. Life all of a sudden became a blur.

We moved to Dallas on June 1, when I was 23 weeks pregnant. It took about five or six weeks for the news to sink in. Our baby had a very serious condition. Right about the time that we came to terms with our news, my water broke. I was 30 weeks pregnant, and I spent the next two weeks in the hospital praying that our precious boy would just stay put! Eleven days later, our sweet Josiah Michael was born. He weighed an astounding 5 lbs. 2 oz. I got about 45 precious seconds with him laid on my chest before he was whisked away to be taken care of. The next 89 days were some of our scariest days, but they were rewarding as we watched Josiah get stronger and ready to come home.

Since Josiah was premature, he was too small for the Norwood operation that was originally planned for him within his first weeks of life. On the fourth day, he was taken in for the pulmonary artery banding operation. It was successful, and Josiah did great. Three weeks later, he was brought to the cath lab to have a stent placed. From that point, we waited for Josiah to steadily gain weight and strength for his Norwood operation. Our big day arrived on Sept. 24, which also happened to be Josiah’s due date. He had met his goal weight of 4 kg (about 8.8 pounds) and was taken into the operating room once again. It was a long 8-hour day in the

54

Patient Stories

55

waiting room that was met with sweet relief when he was brought out of surgery. Once again, he did great, and the long process to recovery started. Those next few days felt like some of the longest days of our lives, but Josiah fought through with the help of all of his wonderful nurses and doctors at Children’s Health. We were discharged on Oct. 29 to finally bring Josiah home!

Those 89 days were not easy. There were a lot of tears and worry, but there were also times for smiles and laughter. Being premature, Josiah had weak lungs, causing collapsed lungs and breathing issues. He was small and spent many weeks in the preemie Isolette. I also remember the hours I spent holding him and cherishing the moments with him in my arms. We were grateful for our nurses and doctors’ ability to joke and laugh, yet be on point when needed.

Once we were home, we started the Safe at Home program. What a blessing! It was a huge sense of relief to know there was always someone available if the need arose. Josiah did well during those few months at home as we waited for his Glenn operation. We checked his weight and oxygen levels every day and met the challenges of having a baby with a feeding tube. In our minds, a feeding issue was small in comparison to what Josiah had just conquered.

Josiah had his successful Glenn operation on Feb. 10. Complications arose during the days following when doctors discovered that Josiah’s right diaphragm had been paralyzed during surgery. He was taken for emergency surgery on Feb. 14. My husband and I enjoyed a “romantic” Valentine’s Day meal in the waiting room that was delivered by someone

cheering Josiah on. After the diaphragm plication surgery, Josiah turned around for the better. He came home the following week.

The following months gave us a breath of fresh air. Life began to feel “normal.” We still met with his cardiologist every couple of weeks, due to his lack of weight gain, but we felt a sense of relief that we made it through the hard stuff. We were able to travel back to Nebraska several times throughout the summer to visit family and celebrate Josiah’s first birthday.

Josiah has come a long way! He has fought through battles that many wouldn’t even dream of! We are still working on his feeding. Josiah has a g-button for feeds, but he has recently started to eat by mouth; we are beyond thrilled! In the next couple of years, Josiah will have his Fontan operation to complete the series of surgeries. Our miracle is now a regular 17-month-old little boy who makes a mess of our living room like any other heart-healthy kiddo. He’s happy, spunky and laid-back. Our journey hasn’t been easy, but it’s been worth every second to get to where we are now!

Patient Stories

5656 Heath Nauman

Mending a Tiny HeartThere are thousands and thousands of books, websites and references on CHDs. None of which came close to making me feel prepared, or as prepared as I could feel, than the face-to-face meetings and conversations I had with the medical team members that would soon be involved in Heath’s care, as well as the first-hand experiences that the other parents had with heart defects. Upon learning our baby was going to be a boy, (our third!), we also learned there was “something not quite right with his heart.” That day began a whole new chapter in our family’s life. If there is one thing I absolutely regret, it was the first thing I did upon hearing the term hypoplastic left heart syndrome. I Googled the term! Of course, there are numerous CHDs, and most children have multiple defects in some form or another. But one common thread when you learn you are facing some sort of major medical issue is that we all turn to technology. I can’t stress enough how much I wish I hadn’t Googled HLHS, especially during my most fragile state. There are so many statistics that are outdated, as well as studies that are still being conducted. I wish there had been someone, back then, telling me to stay open-minded and to initially provide me with connections to others with first-hand experiences.

By Sept. 14, 2012, we were far beyond the meet and greet of getting to know the ins and outs of hypoplastic left heart syndrome. We had been there, done that in terms of sonograms, meetings with the surgical team and mountains of paperwork. We could probably re-draw the diagram of an HLHS heart and what each surgery meant regarding how it would change the heart. But today we entered the world of CHDs, and there was no turning back. Our son would experience the first stage of three surgeries at only 5 days old. From there, he began earning his nickname,

“Rock Star.” Heath seemed to be healing so well and sooner than seemed typical. I remember stepping out to grab something to eat, for what seemed like the first time in days, and coming back to a

Patient Stories

57Heath Nauman

big sign on his door stating that Heath had just taken his very first bottle! This is a huge deal. Feeding for these babies can be quite the hurdle. By taking the first bottle attempt completely, he was making it known that the feeding tube would not last much longer. At only 9 days old, four days post Norwood, Heath graduated to the “Step Down” floor. Through sleepless nights, blaring monitor alarms, one medication after another and training to become Heath’s “nurse” we checked off one success after another. Just over a month later, Heath was discharged to go to the Ronald McDonald House down the street, where he and I would ultimately live for seven months. This was one of my proudest moments as Heath’s mom. My baby had gone through the unthinkable and fought harder than anyone I had known. His eagerness to thrive meant we went home without the feeding tube, without requiring oxygen support and on fewer medications than we originally planned. I continued to beam the brightest smile I have ever seen. Heath deserved the name Rock Star, for sure. His second surgery, the Glenn, was much more difficult than the first, and it did a number on Heath. Managing his pain became one of the top issues. Eventually, we got through it, and we were able to check another major milestone off our CHD list.

By no means was everything easy-going. It wasn’t exactly a walk in the park, but I continued to be amazed at how determined Heath seemed to be to get over the hurdles. It seemed like he had a natural instinct to keep going. He wasn’t a quitter, and still, he remained so pleasant during all the challenges placed in front of him. I think it is important to understand that we absolutely had hard times. We went through times that were so difficult to get through, that it’s only by the grace of God that we did. In addition, I could write chapters upon chapters on Heath’s actual story. My hope is that you will see success during the times that you fear will get the best of you. I want you to know that it is possible to get beyond the big things and come out happy in the end. your

timeline will be different, but happy endings come in so many forms! Like most of the heart patients I have grown to know, Heath’s need for a new heart came into play. The conversation was always an expectation, but it still hit me like a ton of bricks when we actually went through the process to get him qualified for listing. Heath had what was labeled as ‘failure to thrive’ because he was so low on the growth chart. His heart function seemed ok, but his oxygen was staying around the low 70s when it should have been in the low to mid 80s. There were enough variables in place that we knew something needed to be done. A few months before Heath turned 2 years old, he was placed on the heart transplant list as a status 1B. We welcomed yet another new chapter in our life as a heart family and played the waiting game. It became harder and harder for me to see him seem to decline and not be able to do anything for him. The days seemed to rush by. By the time he turned 2, we found ourselves in the hospital getting ready for surgery. We never received the call that a donor heart was waiting for him, but the time had come for us to do something. Heath received a new mechanical valve, and within a month of that replacement, our son gained a pound! It may only be one pound, but Heath went months and months without gaining an ounce.

Our Rock Star was shining again! You will be surprised how strong you can be, and you should feel proud that you are chosen to care for such a gift! Heath has grown our family in ways only having him could have done. Remember the moments, the easy and the hard times, are not what define us. It is how you handle those moments that shows who you are and who you can be. I would never trade our trials for anything, even if it meant Heath would have been born “healthy.” That may sound silly or even harsh, but it’s true. Your heart baby is such a gift, and you will be so very blessed as their parent! Now, that’s encouragement!

Patient Stories

58 Natalie Bunn

It Only Gets BetterOn April 1, 2009, my father passed away. I never thought I could survive my father’s death. I was a “Daddy’s Girl” to say the least. I was also 24 weeks pregnant with my daughter, Natalie. I did not know how I could get through this, but I knew God had a plan.

I remember on the night of April 23, I was lying in bed, and I thought to myself, “life cannot get any worse than it is right now.” Words I will never say again. The next morning, I went in for what I thought was a routine sonogram. See, my kids have always been difficult during sonograms, so I really did not think anything about it. However, we came out of the sonogram 2 1/2 hours later with our world shattered. I was terrified. I do not even remember what all the doctor told me that day except she thought my daughter had hypoplastic right heart syndrome. We were going to have to give birth in Dallas, Houston, Boston or LA, and my daughter would not live a normal life span. What is a normal life span, I kept thinking?

But wait, it gets better; we would have to set up an appointment with the pediatric cardiologist to confirm her condition in a few days. A few days…really? You are sending me home with this? I was scared, terrified and confused. What was God’s plan anyway? This could not be happening to me. Had I not been through enough already?

The next few days went really fast. We had our meeting with the pediatric cardiologist in Amarillo who confirmed Natalie’s condition; tricuspid atresia. Basically, Natalie had a very under-developed lower right heart chamber, almost non-existent.

Patient Stories

59Natalie Bunn

On the morning of July 16, I woke up to my water breaking. I was scheduled for a C-section the following week, so Larry was in Amarillo. Thankfully, my mom was still in town, because she was scheduled on a noon flight back to Amarillo that day. I remember thinking as I gathered my stuff, “Here we go, God please watch over us both.” Natalie was born, and by a miracle, she did not have to have surgery the first week. In fact, she was among the small percentage that was able to hold off. The surgeon told me this never happens, but it happened to Natalie.

On Aug. 24, 2009, Natalie had her first open heart surgery. I had looked at a few blogs, but a blog cannot prepare you for your child going through open heart surgery. She was so young; she did not even cry when they took her.

The surgery lasted six to eight hours. They updated us every hour, and so far things were looking great. Then, our cardiologist came out and told us Natalie was not tolerating the shunt they were trying to put in. He said if we leave it in she will not make it through the night, but if they take it out, then we will have to look at other options. I just stood there with this look like, “Why are you telling me this, take the damn thing out.” The doctor just stood there starring at Larry and I for what felt like forever; finally I asked if there was more. He said, “No, I am just waiting for some emotional response of sorts.” I again just stood there motionless, but inside I was screaming, “You did not come out here and tell me my daughter was dead; you came out and told me we needed to look at other options, so why are you looking at me like that?

Go in there and take the shunt out.” God shielded us for the first time on our journey. He protected our hearts from what, I cannot imagine. I know I will not be able to give this feeling the experience it deserves, but I will try.

After the doctors sewed Natalie up, they brought her down a long hallway into the CVICU (cardiovascular intensive care unit). Larry and I got to stand there and see her before the doctors and nurses took her all the way into CVICU. This is the case after all heart surgeries.

As I stood in the hallway waiting for my daughter to come around the corner, I had all these emotions. I was relieved she was alive; I did not know God’s plan, but I was so happy, yet fearful for the unknown future.

Natalie, however, was in a stressful situation to say the least. Things were changing day by day, minute by minute and sometimes even second by second. One minute, she was going to have an MRI, then the next minute not. Then she was going to have a heart cath, then not. Then, she was going to have surgery, and then at 1:30 a.m., they decided she didn’t need it.

One day we had three options and the next, we only had one...a heart transplant. Once again, I was scared to death; the word transplant was beyond anything I wanted to hear. A heart transplant had positives, but it had a lot of negatives too. It is basically trading one group of problems for another set of problems. Sure transplant would give Natalie a chance to live

Patient Stories

6060

a pretty normal life, but a heart in a child this young would not last forever. I went through what felt like the most important and intense interview of my life. When you need a transplant, you do not just get on the list. There were tests Natalie had to go through, such as brain function, liver and kidney function, etc. I had to meet with two child life specialists, two therapists and the entire transplant team. They gave me a binder of all the medications Natalie would need following transplant and their side effects, such as leukemia. It was an endless few days. Then, the day came when Natalie was officially placed on the list.

I remember blogging that night...“I am not going to lie, I am terrified. I have to keep telling myself at least we have an option, and we are blessed with the amount of support we have. I know God has a plan for her, and we will get through this part. We still have a long road with transplant that will continue the rest of her life. It is so hard for me to ask you all to pray for a heart, because for a heart to become available, someone has to lose a loved one...a baby. I feel selfish asking God for that. I pray that by a miracle everything works out somehow, and she does not have to have a transplant...”

I posted that on Sept. 19 and on Sept. 21, we got a call at 5 a.m. that Natalie’s oxygen had dropped in the 20s and they were having a horrible time raising it. Natalie would have these periods, but she always recovered. I asked the nurse if they had stopped her feeding, and she said yes. I knew what that meant...surgery. I got up and started getting dressed only to get a call a few minutes later saying Natalie would be going into surgery at 7:30 a.m. No, they did not have a heart for her,

Patient Stories

61

but they had to do something, and they were going to re-attempt the first surgery again. The surgery that did not work the first time!

Larry and I got to the hospital around 6:30 a.m. As we were walking into Natalie’s room, all the staff just kind of looked at us with this solemn expression, I did not even notice until later. The nurse asked me if I wanted to hold her. I remember thinking this is weird because I am pretty sure a few weeks ago they told me you cannot hold your child after they are intubated, but I had not gotten to hold her in about three weeks so I was all for it.

The next 30 minutes went by like five, but there was this peace during that time. There was so much commotion going on, it was shift change for the staff and many people were coming in to see us.

Natalie’s surgery only lasted four hours, compared to the previous surgery of eight hours. Larry actually answered the call when they called back and said she was doing better than they could have ever hoped for. “Hoped for” – I thought, that is a strange comment.

It was not until later that afternoon that the light came on in my head. I ran back to Natalie’s room, looked at Larry, and said, “I do not think anyone thought Natalie would survive.” We started to thinking back on the morning, the people’s faces, their actions and words, event the nurse who called Larry to let him know Natalie was doing better than they

could have “hoped.” The surgeon’s face when he came to talk to us after the surgery. People’s comments of how much a fighter Natalie was as I walked down the hall said it all. I dropped to my knees right then. God blessed us more than we could have ever imagined right then and there that day. He answered my prayers!

Patient Stories

6262 Logan Tiley

Each Day Is a GiftIn 2014, my wife and I started a journey that would change our lives completely, but in a way we could never have imagined. We knew the arrival of our son that spring was going to be a big change for the two of us since Logan would be our first child, and neither of us had much experience caring for young children.

Our journey started unexpectedly just one day after Logan was born. Our scheduled delivery had gone exceptionally well, and Logan was born into the world at 11:03 a.m. on April 10 as our healthy 8 pound little boy. Our pre-natal appointments had all gone very well and without any hint of problems. We began to pack our bags on the second day of our hospital stay while we waited for Logan to have his standard tests and procedures completed. It was one of these tests for congenital heart defects that probably saved our son’s life.

The pediatric doctor from our local hospital consulted with a specialist in the Dallas area and confirmed that Logan’s heart needed the immediate attention of a skilled cardiology team. Having heard positive stories from friends about their experience with treatment at Children’s Medical Center Dallas, our decision to choose them for Logan’s care was easy. Within a few short hours our newborn son went from being in our arms to being put on a plane headed for Children’s Medical Center Dallas. Since my wife, Amanda, had just given birth, she would not be allowed to accompany our son on the plane, so I would be the one to sit with Logan as we prayed for answers once we arrived at Children’s Medical Center. It’s fair to say that up until this point neither of us had ever felt this helpless. Once at Children’s Medical Center Dallas, the diagnosis began to emerge. It was difficult to hear and comprehend a complex heart condition, but at least we now had a name for our son’s heart defect. We were taught (not just told) about a series of operations that would give our son a chance at a beautiful and productive life; reassuring words for any parent.

Our little boy has hypoplastic right heart syndrome, and you may

Patient Stories

63Logan Tiley

hear it referred to as HRHS. The Norwood Procedure (BT Shunt) was performed when he was 7 days old to begin the process of reconstructing a workable cardiovascular system for Logan. The days leading up to surgery were tough and character building; it is humbling to be taught how to love someone in a brand new way. The concierges, social workers, case managers, ministers, nursing staff, therapists, doctors and surgeons gladly provided the information on each step of our son’s journey. No question was insignificant to this aspect of the process. Because Children’s is a teaching hospital, questions were and are still encouraged. A month’s stay in a children’s hospital is difficult, there is no way of getting around it, but there is hope. We saw small flickers each day. One day it may be that your child’s oxygen saturation numbers are two points better, or that your child smiled or laughed at something in a book you’re reading to them. Believe us when we say that it does get better, and one day you will stop hearing the monitors go off in your sleep. We also became pros at reading our child without the assistance of computers, trusting our parental instincts, but also freely sharing concerns when we didn’t have answers.

We also found humor to be the key to sanity. Although difficult, we like to use the example of our son’s vocal chord paralysis. After surgery, our son’s vocal chord was paralyzed due to a vein that runs along the side of the vocal chord and the heart, which is not uncommon but isn’t always permanent and can be corrected with speech therapy or simple procedures years down the line. We teased that our son might start kindergarten and introduce himself with the raspy voice of Batman, and how that might work to his advantage when making friends. Humor helps.

If you and your family chose to go through the Safe at Home program you have made a wonderful choice. Before you are discharged from Children’s Medical Center Dallas, you will receive the proper training on how to care for your child, and you will have a number you can call or text at all hours if you have a concern. We

made many calls leading up to our son’s second surgery, and it gave us the confidence to care for Logan in the comfort of a home. Like many that may come to Children’s, our home was not a safe driving distance from the hospital. We were extremely fortunate to have relatives in the Dallas-Fort Worth area and had jobs that allowed us to work remotely. While everyone’s situation is unique, know that the Ronald McDonald House is available if you need a place to stay, and the social workers at Children’s Medical Center Dallas can help you find the most comfortable arrangement possible. It is now January, and Logan is four months past his second of three scheduled surgeries.

What may surprise parents of children that may need multiple surgeries like ours is that while it is beyond challenging to watch your baby or child go back to an OR, we had a better idea of what to expect with his second operation. We also were more confident in what his care would look like, along with what questions we needed to present before discharge. The day we walked into clinic and were told by Nurse Myers that we were released for travel was almost as heart wrenching as seeing our boy recover from two open heart surgeries in just five short months. We could finally take our son home! Life since the Glenn has been more like we thought it would be before our son’s diagnosis. We have a few more doctor and therapy appointments, and we do have to be a little more careful with his exposure to crowds, but for a lot of new parents, these are precautionary measures that many choose to take even with the healthiest child.

Each day is such a gift, our son brings us so much joy and purpose. He’s a chubby, happy little guy that is always ready to play and laugh. Laughter fills our days more than the worry or the sound of monitors.

Patient Stories

64 Safe at Home

Children’s Health was recognized by the Texas Hospital Association with its prestigious Bill Aston Award for Quality. This award recognizes our commitment to improving quality and patient outcomes through the Safe at Home program – a national, evidence-based patient care initiative.

The Safe at Home program augments outpatient clinical care by enabling parents to take an active role in their child’s daily care during the interstage period. Parents receive thorough education on aspects of their child’s recovery, with special emphasis on the early warning signs of potential complications. Dedicated nurse practitioners offer additional guidance and support and are accessible by phone round the clock. Safe at Home outcomesExperience has shown that when parents feel confident about caring for their child and have access to expert support, their child spends less time in the hospital and suffers fewer complications.

• Children’s Health experienced two interstage mortalities in patients undergoing staged palliation, thanks to the Safe at Home program.

• Between 2010 and 2015 (year-to-date), 136 patients have participated in the program.

• The interstage major event readmission rate is 3%. (Major event readmissions include cardiac arrest, shunt occlusion, arrhythmia requiring DC cardioversion, seizure, stroke, aspiration and infection requiring antibiotics.)

• Safe at Home has achieved a mortality rate of 1.4% from 2010 to 2015.

• Interstage death among patients discharged from hospital prior to Safe at Home is 6.2%.

• The median hospital length of stay among patients discharged interstage between 2010-2014 is 41 days.

Safe at Home

Program Volumes2010–2015 yTD Enrolled

136

Interstage Major Event Readmission Rate

3%

Interstage Mortality

1.4%

65HeartGift Foundation

Children’s Health delivers life-saving care through our partnership with the HeartGift Foundation, an organization providing funding, care coordination and medical services for children with congenital heart disease living in developing countries where specialized medical intervention is scarce or nonexistent.

We are proud to be the sole partner of the HeartGift Foundation in Dallas, and one of the largest chapters in the country. From medical screenings to surgery and post-procedure support, Children’s Health delivers life-saving care to children in need.

JOsEph sAiNclAs He came in with undiagnosed Complex

DORV/TGA. We provided surgery/recovery despite increased costs.

HeartGift Foundation

66 Outreach Clinics

At Children’s Health, the “right care, right place, right time” approach

means broadening the geographic reach of our hospital network. Our outreach sites accounted for nearly 4,000 clinic visits in the past year.

In addition to offering convenient locations throughout North Texas, we also ensure timely access to care. Children with urgent or emergent issues can get same-day appointments.

Our outreach sites include:

PEDIATRIC CARDIOlOGy ClINICS• Abilene Regional Medical Center

Heart & Vascular Institute• Plano• Southlake• Trinity Mother Frances Hospital

FETAl HEART ClINICS•Regional Perinatal Center – Odessa

In Association with Odessa Regional Medical Center•Regional Perinatal Center – Midland

In Association with Odessa Regional Medical Center•Arlington Perinatal Associates

Outreach Sites

Tyler

plano

DallasArlington

southlake

midland

Odessa

67

Meet Our Team

Meet Our Team

AnesthesiologistsM. Iqbal AhmedJennifer HernandezGary TurnerSana UllahLuis Zabala Pediatric CardiologistsMaria BanoSarah BlumenscheinBibhuti DasV. Vivian DimasAdrian DyerDavid FixlerF. Gerald GreilLisa HeisteinM. Tarique HussainCatherine IkembaAmy JuraszekColin KaneMatt LemlerLynn MahonySadia MalikShawyntee MayoAlan NugentClaudio RamaciottiSurendranath Veeram ReddyWilliam ScottKavita SharmaAnimesh TandonPoonam ThankavelThomas ZellersIlana Zeltser

IntensivistsSamuel DavilaErin GordonMichael GreenSusan HuppJoshua KochShai ManzuriJessica MorelandJoshua Wolovits

Pediatric Cardiothoracic SurgeonsJoseph ForbessKristine GuleserianTimothy Pirolli

68 Research and Clinical Trials

We take great pride in developing the techniques of tomorrow. Our affiliation with UT Southwestern – one of the world’s foremost research institutions – gives physicians in

The Heart Center access to specialized laboratories, world-renowned clinical researchers and rigorous scientific training in both basic and clinical research.

Our interest in advancing all aspects of pediatric cardiac care, coupled with the immense resources of UT Southwestern, enables us to quickly moves basic discoveries into clinical trials that directly benefit our patients. In addition, national and international collaborations guarantee the highest scientific standards.

Select 2015 efforts include:•Biodegradable stents: Novel interventional technologies

such as biodegradable stents are revolutionizing cardiac interventions. Unlike metal stents, which become permanently entwined in a patient’s tissue, biodegradable stents dissolve over time. These stents will potentially allow us to safely support growing pulmonary arteries and aorta in children with congenital heart disease.

•Totalartificialheart:Children’s Health is one of the few programs participating in the SynCardia 50cc Total Artificial Heart Trial. The 50cc Total Artificial Heart is an investigational device designed as a bridge to transplant for children with end-stage heart failure.

•Single ventricle heart defects: Physicians at Children’s Health are leading multiple studies to improve care and outcomes for children with life-threatening single ventricle heart defects. Interests in this area include feeding, ventilator weaning, surgical care and patient safety.

•Imaging: Interventional cardiologists at Children’s Health are leading several promising studies to improve care for structural heart defects. These efforts include continuing work in coarctation of the aorta and new closure devices for patent ductus arteriosus. We are developing noninvasive imaging methods (including MRI, 3D Tee) to reduce the need for invasive and X-ray dependent imaging technology. Non-invasive imaging is also being used to provide new insights into disease development to improve patient outcomes.

Physicians from The Heart Center last year authored a large number of scientific articles in high-impact medical journals.

Research and Clinical Trials

69

Patient Stories

We believe there is no better affirmation of our mission than seeing happy, healthy patients leave the hospital.

THC160112

children's heart center annual report 2015

Documents