Andersons pediatric cardiology 270
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PsychologicalImpactofaPrenatal
DiagnosisofCongenitalHeartDisease
ThediagnosisoffetalCHDisoftendevastatingforparents.Whilereelingwith
griefforthelossofthehealthychildtheyexpected,parentsmustquicklylearn
medicalterminologytounderstandthediagnosisanditspotentialimpactonthe
childandfamily.Feelingsofanger,shock,disbelief,fear,andguiltarecommon
andhaveamajorimpactonparents’abilitytoabsorbinformation.Formany,
thereisasenseofalossofcontrolandafearoftheunknown.
Theprocessofundergoingfetalechocardiography,inandofitself,is
associatedwithparentalstressandanxiety,andforsomewomen,depression,
especiallywhentheresultisabnormal.3,4Inaminorityofwomen,aprenatal
diagnosisofCHDhasanoppositeeffect,resultinginimprovedbondingand
reducedanxiety.3
MothersandfathersresponddifferentlytoreceivingadiagnosisoffetalCHD,
withmothersexperiencingsignificantlyhigherlevelsofstressanddepression
thanfathers.5Affectedfathersarelessanxiousandmoreoptimisticthanthose
receivingapostnataldiagnosis.6,7Mothers,however,aremorelikelytosuffera
detrimentaleffectofaprenataldiagnosis—withhighproportionsofmothers
havingclinicallysignificantlevelsofdepression(22%),anxiety(31%),and
traumaticstress(39%).8Thismaybeinpartduetothemother'sconstant
awarenessofthepregnancywithherbody'sphysiologicchanges,thefetal
movements,andconstantcommentsandquestionsfromwell-meaningfamily,
friends,andstrangersaboutthepregnancy.Mothersmayalsobequestioned
about“whattheydid”tocausetheheartcondition,orfeelinappropriateguiltfor
nothavingahealthychild.Thesepsychologicalcomplicationsofaprenatal
diagnosistendtopersistthroughthepregnancyandbeyondandmayalsoimpair
bondingbetweenmotherandbaby,perhapsduetofearsofattachingtoachild
whomaynotsurvive.9,10
AfetalCHDdiagnosisalsohasanimpactonthecouple'srelationship,with
higherlevelsofpartnerdissatisfactionamongaffectedwomencomparedto
couplescarryingahealthyfetus.8Thediagnosisofaseverefetalabnormality
andthedecisionsthatneedtobemadeasaresultoftenpromptcouplestotake
onparentingfunctionsandbegintheprocessofcoparentinganearlierstagethan
usual.11Theseearlyexperiencesofdecisionmaking,informationgatheringand
sharing,andprovisionofemotionalsupportforeachother,setthesceneforhow
coparentingtakesplaceafterbirth.11
Despitethesignificantemotionalimpact,parentsaregenerallygratefulfora
prenataldiagnosis.9PrenataldiagnosisofCHDaffordsopportunitiesforparental
educationregardingthediagnosisandlikelyoutcome,optionsforpregnancy
termination,planningforoptimumtimingandlocationofdelivery,andthe
chancetomakepreparationsforworkandchildcareafterdelivery.Affected
coupleshaveabetterunderstandingoftheirnewborn'sheartconditionthanthose
whoreceiveapostnataldiagnosispriortoneonataldischarge.12Whileoverall,a
prenataldiagnosiscanbeassociatedwithworseoutcomesthanpostnatal
diagnosis(duetomoreseveredisease,andassociatedextracardiacanomaliesin
theprenatalgroup),prenataldiagnosishasbeenshown,forselectedconditions,
toreducemortalityandmorbiditywithoptimizedperinatalandneonatal
management.13–17
Furtherstudyisrequiredtoidentifyfactorsthatcanreducethedetrimental
effectsofaprenatalCHDdiagnosisonmaternalpsychologicalwell-being,
whichcanhaveimportantphysiologicimpactsonthedevelopingfetus;however,
wehaveidentifiedsomepracticalwaystomitigatethestresscouples
experience.18
WhatInformationDoParentsWant?
AccurateInformationontheDiagnosisand
Treatments
Prenatalsupportofthemotherandfamilybeginswithprovisionofaccurate
informationaboutthediagnosisandcommunicationofallthetreatmentoptions
available,includingthoseofferedatotherhospitals.Knowledgeofthecontentof
counselingthatpregnantmothersandtheirpartnersfindmostusefulisimportant
inplanningthediscussion.
Parentsandphysiciansdifferintheiropinionsofwhatisdeemedimportant
informationtocommunicateatprenataldiagnosisandparentsoftenwantmore
informationthanphysiciansprovide.19Ofhighimportanceisaccurate
informationonthediagnosisandsurgicaloutcomesatdifferenthospitals,which
canvarydramatically.20–22Parentsarehighlydependentonphysiciansfor
providingdata,asmostarenotpubliclyavailable.OnlytheUnitedKingdom
publishessurgicaloutcomesforallpediatricheartsurgicalcentersthroughoutthe
region.23IntheUnitedStates,theSocietyforThoracicSurgeonsisnow
publishinglimitedoutcomesdata,baseduponinformationvoluntarilyprovided
bysomepediatricsurgicalcenters.24
Parentsoverwhelminglywanttobegivenappropriatehope,nottofeel
pressuredintheirdecisionmaking,andtoseekopportunitiestointeractwith
otherfamiliesthathavebeenthroughsimilarexperiences.19,25–27Manyparents
wanttoreceiveinformationinwritingandthroughdiagrams,bothtoenhance
theirunderstanding,andprovideareferenceforthemselvesandforfamilyand
friends.26(SeeTable12.1forselectedquotesfromparents.)
Table12.1
Parents'PerspectivesofPrenatalCounseling
Issue
Inaccurate
information
Information
limitedto
diagnosing
orlocal
SelectedQuotesFromParents25,26
Iwastoldthatmychildhadonlya10%chanceofsurvivalto6monthsofageandthatlife
expectancyforsomeonewithsingle-ventricleanatomywasnomorethanacoupleofyears.
Itwouldalsohavebeenhelpfultoreceivestatsonthebesthospitalsandsurgeonsinthecountryfor
myson'sparticularheartdefect.Parentsshouldknowtheyhaveoptions.Itshouldn'tbeagiventhat
youautomaticallygototheclosesthospital/surgeonjustbecauseofproximity.Parentsneedtobe
giveninformation,choices,andsomecontrolovertheirchild'scare.
