ventilation and chronic lung disease

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www.bliss.org.uk

Ventilation and

Chronic Lung Disease


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Published by BLISS the premature baby charityFirst published as two individual fact sheets, Ventilation and Chronic Lung Disease, 2003Reprinted July 2007 Bliss

Acknowledgements:We are grateful to the following people for reviewing this publication:

Richard Cook, Professor of Paediatric Medicine, Liverpool Womens HospitalDavid Field, Professor of Neonatal Medicine, Leicester Royal InrmaryDavid Milligan, Consultant Paediatrician, Royal Victoria Inrmary, Newcastle upon TyneHeather Naylor, Clinical Nurse Specialist, Neonatal Community Service, Queen Charlottesand Chelsea HospitalSandie Skinner, Neonatal Nurse Consultant, Royal Hampshire County Hospital

No part of this booklet may be reproduced in any form or for any purpose without the per-mission of the publisher.

Bliss9 Holyrood StreetLondon SE1 2EL

t 020 7378 1122 f 020 7403 0673e [email protected] Support Freephone Helpline 0500 618140RNID typetalk 018001 0500 618140Blisstext 07800 00 810

Bliss is a member of Language Line .Bliss Publications 01933 318503 or order online at www.bliss.org.ukRegistered charity no. 1002973Charity registered in Scotland SC040006


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Bliss 2009 Ventilation & Chronic Lung Disease 3

ContentsHelp with breathing 3

Ways to help breathing 3

Types of mechanical ventilation 4

Making babies more comfortable 5

What problems can be helped by ventilation? 5

When can a baby come off a ventilator? 7

What is Chronic Lung Disease? 7

What happens to the lungs of a baby withChronic Lung Disease? 8

Which babies get Chronic Lung Disease? 8

What causes Chronic Lung Disease? 8

How does Chronic Lung Disease affect the baby? 9

How is Chronic Lung Disease treated? 9

Can Chronic Lung Disease be prevented? 10How does Chronic Lung Disease affect a baby later on? 10

Useful organisations 11


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4 Bliss 2009 Ventilation & Chronic Lung Disease

Ventilation and Chronic Lung Disease (BPD)

Help with breathingAt birth, babies have to develop

regular, effective breathing.Through breathing, oxygen fromthe air moves through the lungtissues into the blood, where it iscarried to all the cells in the body.Without oxygen, these cells wouldnot be able to function. The wastegas produced (carbon dioxide) isexhaled through the lungs.

Many premature or sick babies develop breathing difculties after birth. Thesedifculties occur because the lungs are not fully developed and the babys brainis not yet mature enough to control effective and regular breathing. Prematurebabies usually require some active help with breathing. This may be with oxygen,Continuous Positive Airway Pressure (CPAP) or ventilation. Extremely preterm babiesusually require ventilation.

Given time, these difculties improve naturally, provided the baby is kept healthy onventilation. Most babies can be taken off support as soon as these problems haveresolved themselves.

Ways to help breathingContinuous Positive Airway Pressure (CPAP)This is the commonest form of help given to support a babys breathing. A CPAPmachine blows oxygen and/or air into the babys lungs to create a constantpressure which stops the lungs collapsing when the baby breathes out. The air/oxygen is given through small soft tubes (prongs) placed just inside the nose orby a small mask over the nose, and the main tubes are secured to a bonnet withVelcro. The baby does all their own breathing but this is made easier by having thelungs kept partially expanded by the CPAP. Most babies cope with the tubes verywell although sometimes the nose can get a bit sore. Many babies also get slightlyswollen tummies because the machine blows into the stomach as well as thelungs. Some premature babies may be on and off CPAP for several weeks.


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Bi-level Positive Airway Pressure(BiPAP)If a baby cannot quite manage on CPAPalone, they can sometimes be helpedby being given a small amount of extra

pressure (a breath) through the prongsseveral times a minute. This works wellso long as the baby can do most of thebreathing and the lungs are workingmoderately well.

Mechanical ventilationIf the lungs are not working at all well and/or the baby cannot manage to do alltheir own breathing, they will need more help. This can be given by a mechanical

ventilator which can help the babys own efforts to breathe, or (if necessary) takeover the breathing function completely.

The ventilator is connected to a supply of air and oxygen, and these are mixed inthe ventilator to give the right levels for the babys needs. To connect the baby tothe ventilator, a tube is inserted through either the nose or mouth into the windpipe(trachea). The tube is kept in place by attaching it to a bonnet or to tape which issecured to the babys upper lip.

Occasionally the tube will need changing if it becomes blocked with mucus or

dislodged.

Types of mechanical ventilationThere are different types of ventilation in use and under development. The mostcommon type gently pushes the air/oxygen mix into the lungs; it then allows timefor the air and carbon dioxide to come out. The speed at which this happenscan be varied. It can be adjusted to match the babys own breathing (around 60breaths per minute). In some cases, the breaths from the ventilator can be set sothat they will be triggered by the babys own breaths.

A very different type of ventilation that may be used (sometimes with a differentventilation machine) is called high frequency oscillation. This gives the baby ahigher amount of CPAP and lots of very tiny, fast breaths (around 600 breaths perminute), so the babys chest appears to vibrate. This may look alarming but thistype of ventilation works extremely well for some of the lung conditions that babiesmay get.


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Making babies more comfortableFor some babies, ventilation in the neonatal period is essential for their survival.However, some aspects of ventilation can be uncomfortable, particularly tubeinsertion and the action of ination and deation of the lungs. Babies can becomeagitated and breathe out of time with the ventilator, cancelling out all the help theventilator is giving.

For this reason, babies on ventilators are often given drugs to provide relief fromdiscomfort and possibly a degree of sedation so that they can sleep more easily.Swaddling the baby can also help.

Some full term babies, or premature babies who just wont settle, may be helpedby the use of drugs, which stop them trying to breathe for themselves for a fewdays.

Whilst a baby is on a ventilator, mucus collects in the airways. A ne, tiny soft tube(suction catheter) is used by the nurses to clear the airway to get rid of the mucusevery few hours, making the baby more comfortable.

What problems can be helped by ventilation?

Lack of enough surfactant (Respiratory Distress Syndrome)Surfactant is an important chemical found naturally in a babys lungs which makesbreathing easier by preventing the air sacs in the lungs from collapsing when thebaby breathes out. Premature babies without enough surfactant will breathe morequickly, often making a grunting noise as they do so. This is called RespiratoryDistress Syndrome (RDS).

Mothers likely to deliver their baby very early may be given steroid drugs to helpmature the lungs of their unborn baby, and to increase the amount of surfactant

in the lungs. Surfactant treatmentcan also be given to babies directlythrough a tube inserted into the

windpipe (a tracheal tube).In spite of this, some prematurebabies will still need the support of aventilator to keep their oxygen levelsnormal.


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Lung immaturitySome extremely premature babieshave very immature lungs. Thestructure of their lungs, as well asthe limited amount of surfactant,can mean that they are not able tobreathe effectively after birth. As wellas needing the immediate supportof a ventilator, these babies maycontinue to be ventilated over aperiod of time.

Apnoea of prematurityPremature babies often have a pattern of breathing during which there are longpauses (apnoeic spells) rather than taking regular breaths. Certain drugs can oftenreduce or stop these episodes from happening, but in severe cases, the supportof a ventilator can help. As the baby matures, these apnoeic spells normallydisappear.

Lung infectionsThe lungs of a baby may be infected at birth or a short time after birth. If the lungsbecome stiff and cannot work well, breathing becomes very difcult and is noteffective. The baby will then need to be on a ventilator to support their breathing.

Fluid that stays in the lungsNormally, the uid that is produced by the babys lungs during the pregnancy startsto be cleared before the baby is born. Occasionally this uid is slow to clear andthe baby will need help with breathing. This is more likely to happen if labour isshort or if the baby has been delivered by Caesarean section.

Meconium aspirationMeconium is a dark greenish material that builds up in the babys digestive systembefore birth. It usually starts being passed as bowel movements (stools) within24 hours of birth. A baby who becomes distressed before delivery may passmeconium while still in the womb. If the baby then breathes in any of the uid inwhich it is oating, this sticky material irritates and partly blocks the airways. Thiscauses breathing difculties during the period straight after the baby is born.


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Congenital abnormalitiesCongenital abnormalities affecting the heart or lungscan also cause breathing difculties. Mechanicalventilation may be needed before surgery or othertreatment.

When can a baby come off a ventilator?Blood samples are taken regularly from babies onventilators to test the levels of oxygen in their bloodso that adjustments can be made in the ventilatorsettings. These also help doctors and nurses todecide when mechanical breathing support is nolonger needed.

What is Chronic Lung Disease?The lungs of premature babies are underdeveloped and susceptible to damage ina variety of ways. Sometimes this damage starts before birth or immediately after.Ventilation, although essential for some babies, may stretch and damage the lungscausing stiffness of the air sacs. These changes show up on a chest x-ray and aredescribed as Chronic Lung Disease (also known as Broncho-Pulmonary Dysplasiaor BPD). If this is the case, the baby may need to stay on a ventilator or CPAP (seepage 3) and on oxygen for longer possibly weeks, or (rarely) months.

The Chronic part means that they have lung disease which goes on for a longtime. Babies are said to have Chronic Lung Disease if they are continuously onoxygen until

28 days of age and their chest x-ray shows up a characteristic appearance typicalof this condition.

What happens to the lungs of a baby with Chronic Lung Disease?The membrane lining a babys lungs is very delicate. If this membrane is damaged,

the result can be inammation, followed by the formation of areas of brous tissue(something similar to scar tissue) in the lungs. As a result, the lungs become stifferthan normal and transfer oxygen and carbon dioxide to and from the blood lessefciently.

Some healthy air sacs in the lungs will remain stretchy and able to take in moreair than the damaged, stiff air sacs, resulting in the patchy x-ray characteristic ofChronic Lung Disease. The good news is that as the baby grows, so do the lungs.Healthy tissue gradually replaces the brous tissue, and the x-ray will return tonormal.


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Which babies get Chronic Lung Disease?Today, Chronic Lung Disease is rare in babies born after 30 weeks, but in babiesborn extremely prematurely (less than 26 or 27 weeks) it is quite common. Some ofthese babies develop the signs of Chronic Lung Disease when they are a week ortwo old even though they may not have needed much, if any, ventilation or oxygento start with.

The majority of premature babies are now treated with surfactant (see page 5).This reduces the severity of early breathing problems but has had little effect onreducing Chronic Lung Disease.

What causes Chronic Lung Disease?The earlier the baby, the more likely they are to develop Chronic Lung Disease. It isnot clear why some babies born after the same length of pregnancy, and treatedwith the same amount of ventilation and oxygen, develop Chronic Lung Diseasewhile others do not. It is likely that the inamation starts while the baby is still in thewomb.

Having a tube in the windpipe, being on a ventilator and breathing oxygen allpotentially add to any inammation already present. Early CPAP treatment whenpossible can help to minimise damage from ventilation, however sometimes ababy with severe breathing problems (respiratory distress) will need high ventilatorpressures and high oxygen levels to keep the oxygen in their blood at a safe level.

Infections, including chest infections, may also be a factor. Very prematurebabies are the most likely to develop infections. In these circumstances, infectiondoesnt mean the everyday coughs and colds parents or other children have, butare germs which would have no effect on a healthy adult but could add to theproblems of a premature baby on a ventilator. These infections can aggravate orworsen the inammation in the lungs.

How does Chronic Lung Disease

affect the baby?Babies with this condition have to workharder to get air into their stiffer lungsand almost always need extra oxygen.This may mean a baby needs to stayon a ventilator or CPAP, and the babyschest may pull in as they breathe.


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When taken off support, the baby may easily become tired, especially during feeds(which may need to be given by a tube for longer than a non-ventilated baby).When babies rst come off oxygen, they may still need it during feeding and whenthey are asleep.

Some babies need oxygen even after they come home but the good news is that,because the lungs are growing fast at this stage, they progressively get better andmost of these babies are off their oxygen by the time they are six to nine monthspast their due date.

How is Chronic Lung Disease treated?Treatment of Chronic Lung Disease is aimed at keeping ventilation and oxygen to aminimum safe level and reducing them very gradually as the babys lungs improve.

Sometimes babies may need a medicine called a diuretic, which makes them passmore urine to remove any extra uid from the lungs.

Steroid treatment may also be given to try and speed up the healing process in thelungs.

Can Chronic Lung Disease be prevented?Chronic Lung Disease cannot be prevented but a great deal of research iscontinuing to try and nd ways of making it less common. In the meantime, a lotcan be done to reduce its effects. Babies who need to be on a ventilator will beregularly monitored through blood tests and/or a skin electrode. The latter gives aconstant record of the level of oxygen in the babys blood.

Oxygen saturation is also continuously measured usinga small device taped to the babys hand or foot andgives similar information. These types of monitoringallow the doctors and nurses to reduce the ventilatorsetting as soon as possible and therefore minimise thepossible damage on the lungs.

How does Chronic Lung Disease affect a babylater on?Almost all babies with Chronic Lung Disease whoremain healthy following discharge from hospital showsteady improvement with their breathing difculties.When a baby rst comes home, ordinary coughs andcolds may make them chestier or more wheezy than a


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baby without Chronic Lung Disease.Re-admission to hospital for a few days ona ventilator may sometimes be needed.

Babies with Chronic Lung Disease are

often slower to gain weight, but usuallycatch up over a period of time. If they werevery small at birth or had severe lungproblems, they may remain slightly shorterand lighter than other children of their age.

Babies continue to grow new air sacs until the age of about three years, anddamaged areas of the lungs become less signicant. Eventually they should bejust as healthy as other children, although small changes may remain on x-rays, orshow up on detailed breathing tests.

Chronic Lung Disease does not in itself affect a childs development or learningability. Where a baby has had a lot of other problems, extra help may be of benetand your paediatrician will be able to give you advice.

If you have any questions about the ventilation of your baby or Chronic LungDisease, please ask a member of staff on the unit. You will also nd a list of usefulorganisations on the next page.


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Useful organisationsBenets and maternity rightsCitizens Advice Bureau (CAB)

t: 020 7833 2181www.citizensadvice.org.uk

Tax Credits Helplinet: 0845 300 3900www.hmrc.gov.uk

Working Families1-3 Berry StreetLondon EC1V 0AAt: 0207 253 7243www.workingfamilies.org.uk

Causes of premature birth andantenatal informationAction on Pre-eclampsia (APEC)Information and support services.84-88 Pinner Road, Harrow

Middlesex HA1 4HZt: 020 8863 3271Helpline: 020 8427 4217www.apec.org.uk

Antenatal Results and ChoicesInformation and support for parents to be.73 Charlotte Street, London W1T 4PNHelpline: 020 7631 0285t: 0207 631 0280www.arc-uk.org

Group B Strep SupportP.O Box 203, Haywards HeathWest Sussex RH16 1GFt: 0870 803 0023www.gbss.org.uk

National Childbirth Trust (NCT)Antenatal support and breastfeeding advice.Alexandra House, Oldham Terrace, ActonLondon W3 6NHt: 0870 444 8707

Breastfeeding helpline: 0870 444 8708www.nctpregnancyandbabycare.com

TommysResearch into causes of premature birth andother complications.Nicholas House, 3 Laurence Pountney HillLondon EC4R 0BBt: 0870 777 7676Pregnancy information: 0870 777 30 60www.tommys.org

Clothes by mail order for babieswith a low birth weightBabycityUnit 20 Belvue Business CentreBelvue Road, NortholtMiddlesex UB5 5QQ

t: 020 8845 5588e: [email protected]

Clothes 4 PrematuresAshley Alexander, 1 Aldiss CourtHigh Street, DerehamNorfolk NR19 1TSt: 01362 853313

www.clothes4prematures.co.ukDesigner Angels11 Market Gate, Market DeepingLincolnshire PE6 8DLt: 01778 345963e: [email protected]


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PreciousPrems Ltd18 Paddockdyke, SkelmorlieNorth Ayrshire PA17 5DAt: 01475 521863m: 07830 149592/593.

e: [email protected]

Tiny Baby & Co LtdThe Old Bakery, King Street, EastwoodNottingham NG16 3DAt: 01773 715577www.tinybabyandco.com

Peeny Weeny BabyP.O Box 71, ShanklinIsle of Wight PO37 6ZWt/f: 01983 863 532m: 07973 362 955www.peenyweeny.co.uk

Vertbaudet PO Box 125, Bradford BD99 4YGt: 0845 270 0270

www.vertbaudet.co.ukCounselling and advice

The Association for Post-natal Illness (APNI)145 Dawes RoadFulham SW6 7EBHelpline: 020 7386 0868www.apni.org

Birth Trauma AssociationOffers support to all women who have hada traumatic birth experience.PO Box 671, IpswichSuffolk IP1 9ATwww.birthtraumaassociation.org.uk

British Association of Counselling andPsychotherapy

Represents counsellors andpsychotherapists and can signpost you to

a local therapist.BACP House, 35-37 Albert StreetRugby, Warks CV21 2SGt: 0870 443 5252www.bacp.co.uk

Cry-sisSupport for families with excessively crying,sleepless and demanding babies.Helpline: 08451 228 669www.cry-sis.org.uk

Fathers Direct Online information on fatherhood.t: 0845 634 1328www.fathersdirect.com

For Parents By ParentsA parenting information and advice site.c/o 31 Main Street,Bishopstone, AylesburyBuckinghamshire HP17 8SFt: 01296 747551www.forparentsbyparents.com

Foundation for the Study of Infant Deaths(FSID)Information about safe-sleeping andapnoea monitors.Artillery House, 11-19 Artillery RowLondon SW1P 1RTt: 0870 787 0885Helpline: 0870 787 0554www.sids.org.uk/fsid

Family Welfare AssociationHelps parents under stress.501-505 Kingsland RoadLondon E8 4AJt: 020 7254 6251www.fwa.org.uk


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GingerbreadInformation and support to lone parentsthrough a network of local groups.7 Sovereign Close, Sovereign CourtLondon E1W 2HW

t: 020 74039500Helpline: 0800 018 4318www.gingerbread.org.uk

NHS Pregnancy Smoking Helpline:0800 169 9 169www.gosmokefree.co.uk

SamaritansCondential counselling service.PO Box 9090Stirling FK8 2SAt: UK: 0845 790 9090t: ROI: 1850 609090e: [email protected]

Tiny life(Northern Ireland only)

Unit 1, 33 Ballynahinch RoadCarryduff, BelfastBT8 8EHt: 028 90 81 5050www.tinylife.org.uk

One Parent Families225 Kentish Town RoadLondon NW5 2LXt: 0800 018 5026www.oneparentfamilies.org.uk

Post Natal IllnessWebsite for the sufferers and survivors ofpost natal illness and post natal depressionwww.pni.org.uk

Parentline PlusOffers support to anyone parenting a child.Helpline: 0808 800 2222www.parentlineplus.org.uk

Threshold Womens Mental HealthCondential telephone helpline offeringemotional support to women andsignposting to local support services.Helpline: 0808 808 6000

wpf Counselling and PsychotherapyProvides counselling across the UK.23 Kensington Square, London W8 5HNt: 020 7361 4800www.wpf.org.uk

Home supportChildcare LinkFor details of your local ChildrensInformation Service (CIS), a list of registeredchildcare in your area and for otherinformation about childcare.Freephone: 0800 096 0296www.childcarelink.gov.uk

Home-Start UKSupport for families with young children.2 Salisbury RoadLeicester LE1 7QRt: 0116 233 9955Freephone: 0800 068 6368www.home-start.org.uk


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Multiple birthsMultiple Births FoundationFor information and support.Hammersmith House Level 4Queen Charlottes and Chelsea HospitalDu Cane RoadLondon W12 0HSt: 020 8383 3519e: [email protected]

www.multiplebirths.org.uk

Twins and Multiple Births Association(TAMBA)

2 The Willows, Gardner RoadGuildford Surrey GU1 4PGt: 0870 770 3305Twinline: 0800 138 0509www.tamba.org.uk

Nappies up to 6lbs/3kgBoots High PerformanceLow birth weight nappies.

t: 0845 070 8090www.boots.com

Pampers Micro and Premature NappiesFreephone: 08456 013272

Tesco NappiesPremature baby size, available at mediumand larger stores.t: 0800 505 5555

www.tesco.com


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Other Bliss publications Bliss general leaet Breastfeeding your premature baby

Containment holding poster Facts for fathers Financial help for families Going home your questions answered Going home on oxygen Kangaroo Care poster Little bliss

magazine ** Look at me Im talking to you!* Parent Information Guide also available in Polish, French*, Urdu*,

Portuguese*, and Bengali* RSV (Respiratory Syncytial Virus) The next pregnancy Ventilation and Chronic Lung Disease your questions answered Young parents information guide

* download only ** subscription only

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