Managing the baby with Down Syndrome; a neonatologists perspective - PowerPoint Presentation

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Managing the baby with Down Syndrome; a neonatologists perspective

Judith Meek

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UCLH

A journey

Antenatal

Counselling

Preparing for surgery/NICUPostnatalConfirmed antenatal diagnosisSuspected antenatal diagnosisDiagnosed after birthDischarge planningFollow up

Antenatal counselling

The neonatologist may be the first person to talk about the baby as a child with a future who will play with siblings and friends and go to school

Rarely asked to talk to parents considering termination, and if we are, are we the right person to advise about life beyond the neonatal period ? Are we here to put the baby’s case to the parents ?

Neonatologists need to be well informed about current lifestyles and developmental issues

29/12/17

Counselling when baby is going to need surgery/NICU

Cardiac anomalies

VSD/ASD

AVSDGastro-intestinal Duodenal atresiaOther atresia(s) including ano-rectal malformationsHirschprungsPleural effusions/chylothorax

What to expect in NICU/CCU

Longer stay than non DS babies

More post-op complications

Later to extubateRisk of pulmonary hypertensionVascular accessExpressing milk is important even if not planning to breast feedEarly growth may be important in preparation for heart surgeryLogisticsOther children

Discuss surgery/NICU with unconfirmed diagnosis

Similar discussion

Be sensitive to the fact that diagnosis is unconfirmed although likely

Be honest that the diagnosis is sometimes obvious after the baby is born, but that we will confirm with genetic testsDiscuss tests and how long they takeReassure parents that the medical and surgical treatment their baby will receive will not depend on the diagnosis

After birth

Antenatally confirmed

Antenatally suspected

UnexpectedAny of these can present with a diagnosed or undiagnosed congenital anomaly which might need urgent surgeryEven an antenatal diagnosis may have missed a surgical problemExamine baby carefully

Postnatal support; always confirm with blood test, including FBC and GATA

Diagnosis confirmed antenatally

Visit early and congratulate parents

Examine carefully, not all anatomical problems are detected by ultrasoundDiagnosis suspected antenatallyVisit early and congratulate parents, examine carefullyDiscuss your findings frankly with parentsBe guided by them about how much they want to know straight awayThis may be informed by antenatal discussionsYou may need to delay discussions until diagnosis is confirmedArrange a time to come back and see family again (may include other family members)

Postnatal diagnosis; myths

Young women do not have babies with DS

You can’t have a DS baby by IVF

Twins can’t have DSDS babies are always floppy on day 1DS babies don’t have enough tone to breast feedDS babies don’t look like the rest of the familyAntenatal scans can diagnose every anomaly

The dangers of early postnatal discharge; increasing number of undiagnosed babies attending A&E with complications

Babies often look dysmorphic after a long labour

Some babies seem to have high tone on day 1

Antenatal history is not always availableNot all families speak medical EnglishNot all congenital heart disease presents with a murmurMany babies do not open their bowels on day 1

What do you do if you suspect a new baby has Down Syndrome ?

Give the baby to mother to hold

Follow the mother and baby dyad’s cues

In other words; do the same as you would for other mothers and babiesRefer to the most senior neonatologist available who can talk to the family and examine the baby as soon as possibleIf you need an interpreter, arrange this urgently

Don’t forget to take a proper history

Risk of sepsis

Maternal diabetes/beta blockers hypoglycaemia

Fetal distress/meconiumDelayed cord clamping (maybe not appropriate for DS babies)Breech with risk of CDHIn other words; the same as every other baby

Early postnatal diagnoses you shouldn’t miss

Airway obstruction/apnoea

Cyanotic congenital heart disease/ LV outflow tract obstruction

Pulmonary hypertensionPolycythaemia (and resulting jaundice)Hypoglycaemia due to above and to poor feedingHypocalcaemiaHypothyroidismTAM (although low platelets are common without TAM)

Things not to say

‘These children…’

He’ll never be normal

He’ll never be able to do …Down Syndrome children are always happyHe’ll never breast feedIt’s because of your age (remember that most DS children are born to younger mothers)

Where to care for mother and baby

Try not to separate mother and baby

Just after birth

On post natal/transitional care wardPost-opDesign a feeding plan that works for mother and babyListen to mother’s preferencesInvolve SALT earlyBalance getting home with desire to breast/tube/bottle feedConsider achieving target weight for cardiac surgeryContinue to provide information at the family’s pace

Feeding and fluids

Firstly keep baby safe

IV access can be difficult especially if baby is dehydrated

Use NG feeds or UVC early Be flexible according to mother’s wishesSometimes it is better to tube feed for a bit longer to achieve breast feedingSometimes it is better to top up with bottles to get home soonerSmall babies awaiting cardiac surgery will need high energy supplementsAny baby with shortness of breath has increased calorific requirements

Be well organised

Checklist; this should be in your local guidelines

Blood tests

Referrals for eye and ear checksEchoRed bookUse interpreters if necessary. If in doubt book one.Arrange times and rooms to speak to the family. This may need to be after work for the baby’s fatherUse up to date written information, translated if necessary

Discharge planning

Plan ahead

Include family and all relevant professionals, be clear about roles

Good documentation/communicationPitfallsAddress of family and GP in different areas. Difficult to co-ordinate care between commissioning groupsDischarge from postnatal, ward without support of NNU team is more difficult and babies are not recorded on SENDDischarged by surgical team

Follow up

Specific

Cardiac/diuretics/U&E’s

Collating results eg GATAOut patient appointments with specialistsLiaising with community teamGeneralGrowth & developmentBlood testsEye & ear referrals

Ongoing role of the neonatologist

Developmental follow up specialist

Consultant with special interest

Co-ordination and filling in gapsMaintaining a long term relationshipPoint of contact for arranging investigations in hospitalSupport during hospital admissionsCelebrate milestones and achievementsIf we follow children along their journey we will be more effective in supporting families in the future