Andersons pediatric cardiology 276
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awareofthebest-andworst-casescenariosforthe
typeoffetalCHD.
▪Whetherthereislikelytobeanimpacton
neurodevelopmentanditspotentialseverity.
▪TherelationshipbetweenseverityofCHDand
intellectualfunctioning,withahigherproportionof
childrenwithsevereCHDhavinglow-normalIQ
comparedwiththosewithmild-moderateCHD.47
Someparentsmayoverestimatetheimpactand
believethatthechildwillbeseverelyintellectually
disabled;however,Brosigetal.foundthatCHD
patientswithoutgeneticcomorbiditiesexhibited
cognitiveabilitieswithinthenormalrange.48
▪Thepotentialforfeedingdifficulties,troublewith
infantweightgain,anddelaysindevelopmental
milestonessuchascrawling,walking,andspeech,as
wellasearlyinterventionservicestomitigatethese
delays.
▪Adescriptionoftheiroptions.Whereappropriate,
presentoptionsofterminationofpregnancy,palliative
care,andsurgical/medical/interventionaltreatment.In
therarecaseswhereintrauterinetreatmentisavailable
(e.g.,balloonaorticvalvuloplastyforcriticalaortic
stenosisor,morecommonly,maternalmedical
therapytotreatfetalarrhythmia),theparentswill
requireanunderstandingofwhatthiswouldinvolve,
anticipatedoutcomes,andtherisksofthetreatment
(toboththemotherandfetus).
▪Adescriptionofwhattoexpectifthepregnancyis
ongoing.Howmanymorevisitstothefetal
cardiologyclinic,whatwouldbetheanticipatedtype
ofdelivery,wherewouldthedeliverytakeplace,
wouldthebabybedeliveredprematurely(inthe
majorityofcases,avaginaldeliveryclosetotermis
preferred).
▪Iftheyareconsideringpregnancytermination,
informationonthelegalsituationregardingwhena
decisionwouldhavetobemadeand,iftheychoose
thisoption,ensuringtheyunderstandwhatthe
procedureentails.Itisvitalthattheparentsdonot
feelrushedintomakingadecisionandtheytaketime
toprocesstheinformationanddiscusstheiroptions
betweeneachotherandanyoneelsetheychooseto
involve.
▪Acknowledgmentthateverybabyisdifferent—the
fetalcounselorsgiveabasicblueprintforcommon
anticipatedoutcomes;however,thechild'sactual
outcomewilldependonmanygeneticand
environmentalfactors.
Patientsoftenaretoooverwhelmedtoaskmanyquestionsattheinitial
counselingsession.Commonthemestendtoemergethatparentswouldlike
informationon,socounselorsshouldanticipatewhattheymaywishtoknow.
Acknowledgethatparentsoftenfeelguiltyortoblameinsomeway;address
whetherthecauseofthefetalCHDisknownorcouldhavebeenavoided.
Familiesareoftenafraidtoaskquestionssuchascouldthediagnosisbewrong
andwhatarethechancesoftheheartdefectimprovingonitsown.Theyare
oftenworriedaboutwhethertheirotherorfuturechildrencouldhavean
undiagnosedheartproblem.Itisgenerallyagoodideatoaddresswhetheraheart
transplantisanoptionormayberequiredduringthechild'slifespan.
ActionPointsAftertheFirstAppointment
▪Parentsrequireinformationabouthowtomake
contactwiththeteamtoaskquestionsastheyarise.It
ishighlylikelythatparentswillthinkofmore
questionstoaskthecareteamastheyprocessthe
informationtheyreceivedattheinitialcounseling
session.Afetalcardiacnursecoordinator/navigatoris
averyhelpfulresourceforfamiliestocontact.In
addition,afollow-upphonecallorhomevisitfrom
thenursecoordinator/navigatorinthedaysafterthe
initialconsultationmaybeextremelyhelpful—this
wouldprovideanopportunitytorevisitthe
informationgivenintheinitialcounselingsessionand
toanswerquestionsthathavearisen.
▪ParentsoftenconsulttheInternetforinformation,
includingsocialmediaandblogs.Itisimportantto
remindfamiliesthattheInternetisunregulatedand
thatattimesunreliableinformationwillbe
encountered.Itishelpfultosupplyalistofreliable
websitestoconsult(seeBox12.1).
▪Itmayalsobeappropriatetoofferanopportunityto
meetwithanotherfamilywhohavebeenthrougha
