Andersons pediatric cardiology 275
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TimingofInformationPresentedto
Parents
WhatShouldBeDiscussedattheFirst
Session(Box12.2)
Box12.2
FrameworkforCrucialInformationtoCover
attheInitialConsultation
DetailsoftheCardiacDiagnosis
Explanationoftheanatomyandphysiology(insimpleterms,using
diagramsandmodels)
Handoutstotakehome
ExpectedPrognosis
Prenatal,postnatal,andlong-termmortalityestimates
Riskofprogression—likelihoodandimpactofsignificantworseninginthe
condition
Quality-of-LifeIssues
Impactonexercise,behavior,employment,abilitytohavehealthy
offspring
LikelihoodofExtracardiacAbnormalities
Whatcanbedetectedprenatallyvs.onlyfoundpostnatally
Prenataltestingoptions—ultrasound,magneticresonanceimaging,genetic
testing
Riskofgeneticabnormality—risksvs.benefitsofprenataltesting
NeurodevelopmentalImpactoftheCardiacDefect
Especiallyinthesettingoffunctionallyuniventricularheartsorgenetic
abnormalities
PotentialCausesoftheHeartCondition
Addressanyfeelingsofblameorguilt
DiscussionofLikelyPrenatalSurveillance
Frequencyoffetalechocardiography,needforrelocationtodelivernear
cardiacsurgicalcenter,timingandmodeofdelivery
ManagementOptions
Fetaltreatment(transplacentaldrugtherapyorfetalcardiacintervention)
Terminationofpregnancy(isthisanoptionforthecouple?Amountof
detailsgivensubsequentlydependonparentresponse—e.g.,howisthis
done,legalcontext—requiredlegallengthoftimefordecision)
Palliativecare—isitanoption?Whatisinvolved?
Activepostnatalmanagement(medication,intervention,surgery)—
expectedtype,timing,risks,andoutcomes
AcknowledgeAnyAreasofUncertainty
Inthediagnosis,managementstrategy,andanticipatedoutcome
ProvideAccesstoPost-CounselingResources
Writteninformationaboutthescanresult
Parentinformationhandouts
Supportgroupinformation
Reliablewebsitesforfurtherreading
Contactdetailsforfurtherquestions/information—e.g.,fetalcardiacnurse
specialist
▪Abasic,layman'sexplanationofthediagnosis
shouldbegiven—includingtheuseofdiagramsand
heartmodels.
▪Thepresence/likelihoodofthebabyhavingother
problems—includinggeneticabnormalities,an
explanationofwhetherthesecanbeidentified
prenatally,andthelikelyimpactoftheseonoutcome.
Parentsshouldbecounseledontheoptionofprenatal
genetictesting,ifappropriate.
▪Theriskofprogressionincludinganyriskoffetal
loss.
▪Theriskofneonataldeath.
▪Theestimatedlifeexpectancywiththiscondition,if
known.
▪TheanticipatedQOLforpeoplewiththisformof
CHD—howwillthediagnosispotentiallyimpacttheir
child'sabilitytoparticipateinsports,gotoschool,
havechildrenoftheirown,andtohaveajob.
▪Acknowledgmentthatthereisaspectrumofdisease
andoutcomesforagivendisease.Parentsshouldbe
