Judith Meek UCLH A journey Antenatal Counselling Preparing for surgeryNICU Postnatal Confirmed antenatal diagnosis Suspected antenatal diagnosis Diagnosed after birth Discharge planning ID: 933171
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Slide1
Managing the baby with Down Syndrome; a neonatologists perspective
Judith Meek
.
UCLH
Slide2A journey
Antenatal
Counselling
Preparing for surgery/NICUPostnatalConfirmed antenatal diagnosisSuspected antenatal diagnosisDiagnosed after birthDischarge planningFollow up
Slide3Antenatal 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
Slide429/12/17
Slide5Counselling when baby is going to need surgery/NICU
Cardiac anomalies
VSD/ASD
AVSDGastro-intestinal Duodenal atresiaOther atresia(s) including ano-rectal malformationsHirschprungsPleural effusions/chylothorax
Slide6What 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
Slide7Discuss 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
Slide8After 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
Slide9Postnatal 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)
Slide10Postnatal 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
Slide11The 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
Slide12What 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
Slide13Don’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
Slide14Early 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)
Slide15Things 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)
Slide16Where 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
Slide17Feeding 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
Slide18Be 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
Slide19Discharge 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
Slide20Follow up
Specific
Cardiac/diuretics/U&E’s
Collating results eg GATAOut patient appointments with specialistsLiaising with community teamGeneralGrowth & developmentBlood testsEye & ear referrals
Slide21Ongoing 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