Andersons pediatric cardiology 269
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OptimizingPrenatalSupportofthe
MotherandFamily
AngelaMcbrien,DebraHilton-Kamm,LisaK.Hornberger
Abstract
Supportofthepregnantmotherandherpartnerisacriticalelementinthe
prenataldiagnosisandmanagementoffetalheartdisease(congenitalheart
disease).Fromthemomentawoman/coupleareidentifiedaspossibly
havingafetuswithcongenitalheartdefect,toenteringthefetalcardiology
clinic,throughtheexam,prenatalcounseling,subsequentvisits,andthe
peripartumperiod,careprovidershavetobesensitivetoandactivelyseek
outwaystomitigatethestressexperiencedandprovideaccurateand
sufficientinformationtoensureinformedconsentisachieved.Thischapter
reviewsourunderstandingofthestressexperiencedbyaffectedpregnant
womenandfamiliesbasedonthepublishedliterature,thenecessary
elementsofandanapproachtoprenatalcounseling,includingthe
perceptionsofphysiciansandfamilies,andstrategiestosupportthe
familiesbeyondthecounselingperiod.
Keywords
Prenataldiagnosis;fetalechocardiography;congenitalheartdisease;
prenatalcounseling
Supportofthepregnantmotherandherpartnerisacriticalelementinthe
diagnosisandmanagementofcongenitalheartdisease(CHD)inthefetus.From
themomentawoman/coupleareidentifiedaspossiblyhavingafetuswithCHD,
toenteringthefetalcardiologyclinic,throughtheexam,prenatalcounseling,
subsequentvisits,andtheperipartumperiod,careprovidershavetobesensitive
toandactivelyseekoutwaystomitigatethestressexperiencedandprovide
accurateandsufficientinformationtoensureinformedconsentisachieved.
Probablythemostimportantandoverwhelmingeventforanaffectedfamilyis
theprenatalcounselingatthetimeofdiagnosis.Counselingisacomplex
process,involvingamultidisciplinaryteamofpeoplewhoshouldhavean
understandingofspecificissuesrelatedtofetalaswellasneonatalCHD.Itsets
thestageforthecoupleformakingadecisionregardingwhethertheywill
continuethepregnancy,adecisionthatwillberememberedlongafterthepatient
hasleftthefetalprogram,andhowthefamilywillcopethroughtherestofthe
pregnancyanddeliveryofcontinuedpregnancies.Accurateandempathetic
counselingfosterstrulyinformeddecisionmaking,improvesdoctor-patient
relationshipsbydevelopingtrust,reducingmisunderstandingsandavoiding
confusion,andultimatelyoptimizesoutcomesbyensuringparentsareprepared
tocareforthechild.
Everyfamilypresentswithvariableexperiences,culturalbackgrounds,
beliefs,educationlevels,copingmechanisms,andsupportsystemsaswellas
varyingfamilyandfinancialsituations.Thesevariablesimpactwhatthey
understandofthediagnosis,whattheyneedtocopeduringthisdifficulttime,
andhowtheywillmakedecisions.Othercriticalvariablesincludetheextentand
accuracyoftheinformationparentsreceiveduringthistimeandhowthat
informationisdelivered.Therearenowidelyacceptedstandardsforfetal
counselingforcongenitalheartdiseaseandthereforephysiciansmayreceive
little,orno,formaltraininginthisarea.Informedconsentrequiresthepatient(in
thiscasetheparent)tobeproperlyinformed;however,thefewstudiesthathave
focusedoncounselingcontenthavefoundgreatvariabilityinthedegreeof
informationsupplied.1,2Inaddition,Murtuzaetal.foundthattherewasa
markedinconsistencyinthecompositionofthecounselingteam.1Arecentstudy
foundthatthemajorityofphysicianscounselparentsalone,andthesettingand
durationofcounselingvariedsignificantly.1,2
Providingadequateprenatalsupportforfamiliesrequiresanunderstandingof
(1)whatcouplesgothroughemotionallyandpsychologically,(2)the
informationandresourcestheyrequire,(3)howbesttorelaythatinformationso
thatitisunderstood,and(4)self-awarenessonbehalfofthecounselortolimit
bias.Wediscussthoseissuesbelowinadditiontopracticalconsiderationsfor
physiciansandasuggestedframeworkforpresentinginformationtothose
receivingaprenataldiagnosisofCHD.
