Andersons pediatric cardiology 271
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hospital
Information Havingawrittenexplanationandpicturesexplainingourdaughter'sCHDwouldhavebeenvery
givenonly helpful.IwouldliketohavebeenshownadetailedmodeloftheheartexhibitingherCHDIama
verbally
veryvisualperson,andIhadgreatdifficultyinunderstandingherdefects.Theshockandstressonly
compoundedtheproblem.
Usingthe
KnowingthatalotofchildrenhaveCHD.Wehadnotheardofthisbefore.
term“Rare”
todescribe
the
incidence
Connecting Havinganothermomwhohadgonethroughthiswouldhavebeengreat.IfeltasifIwastheonly
toothers
personintheworldgoingthroughthiswithmychild.IhadneverevenheardofCHD.
Physician
ThefirstcardiologistwesawtolduswewereselfishifweallowedoursontolivewithHLHS
beliefsand becausehewouldn'tbeacceptedbysociety.
biases
Compassion Thefirstsurgeon/cardiologistcouldhavespokentouswithcompassionandunderstandinginstead
and
oftellingustotakeherhometodie,butnottoworry—youcanalwayshavemore(children).
empathy
Optimism
Iwastaughttoprepareforherdeath.Noonepreparedmeforwhatshewouldbelikeifshe
survived.
Hope
Giveappropriatehope.Weweregivenlittlehopefromthecardiologistthatdiagnosedus.Whenwe
spoketoothersandlearnedofthechildrenlivingwithHLHS,wefelttherewasnoreasonto
terminate.However,justtalkingtothedoctor,you'dthinktherewasnotchanceofthat.
Religiousor Ifaparentsaysterminationisnotanoptionbasedonpersonalandreligiousconvictions,that'sthat.
ethical
Itshouldnotbementionedagain.
beliefs
regarding
termination
Termination Thefirstoptionthatwaspresentedtouswasabortion.Ifoundthistobedisgusting.Wewerenot
asan
tolduntil40minutesintothediscussionabouthowourchildwouldhave“noqualityoflife”that
option,
thereweresurgicaltreatmentoptionswithdecentsuccessrates.Physicianswhofeeltheyneedto
alongwith presentabortionor“compassionatecare”asanoptionneedtodosoaftertheyhavetoldconcerned
treatments parentsthattherearetreatmentoptionsandthatthereareplentyofpeople(whoare)aliveandthrive
withCHD.
CHD,Congenitalheartdiseases;HLHS,hypoplasticleftheartsyndrome.
Parentsmaynotrealizethatprenataldiagnosesarenotalwaysdefinitiveand
shouldbemadeawareofthelimitationsofafetaldiagnosisincludingpotential
lesionsthatmayimportantlyimpactclinicaloutcomesafterbirth.Inonecenter's
experienceinFrance,Bensemlalietal.foundthatthediscordancebetween
expertfetaldiagnosisandthefinaldiagnosisafterbirthledtosignificantchanges
inneonataltreatmentin11%ofcases.28Incaseswithafetalautopsyfollowing
terminationofpregnancy,9%hadatotallydifferentdiagnosisthantheprenatal
diagnosisand14%hadmajordifferencesfromtheprenataldiagnosis.A
multicenterstudyinTheNetherlandsreportedsimilarfindingswheretherewas
nosimilaritybetweenpre-andpostdiagnosisin8%ofcases.29Physiciansshould
informparentsiftheyareuncertainofadiagnosisandofferasecondopinion
whereappropriate.
ProjectionsandDefinitionsofQualityofLife
Parentsaregenerallymorefocusedonqualityoflife(QOL)andareless
interestedinthespecificanatomicdiagnosis.19,30Thephysiciangiving
informationonQOLshouldbeawarethattherearedifferencesbetweenhow
physiciansviewQOLinpatientswithCHDcomparedwiththepatientsandtheir
families,withphysiciansfrequentlybothoverestimatingandunderestimating
QOLasquantifiedbychildrenwithCHDandtheirparents.31
Marinoetal.foundthatphysicians’definitionsofQOLincludedmore
negativedescriptorsthatwereassociatedwithmedicalproceduresandhospital
stays.ParentsandtheadolescentswithCHDviewedQOLinbroaderterms,
includingnon-health–relatedfactors,andevenincludedpositivedescriptorsof
havingCHD.32Onestudyfoundpoorreliabilityforpredictingpatientand
parent-proxyreportedHealth-RelatedQualityofLifeamongphysiciansand
nurseswhoroutinelycareforcardiacpatients.31Thiswastrueforallfiveofthe
cliniciangroupsinthestudy:intensivecarephysicians;outpatientcardiologists;
andintensivecare,outpatient,andadvancedpracticenurses.Thestudy
concludedthatcliniciansmaynotmakeaccurateassumptionsregardingHealthRelatedQualityofLifeinpatientslaterinlife.
Aryaetal.foundthatphysiciansandparentsratedsurvivingintoadulthoodas
important,butparentsalsoratedsurvivalintoearlychildhoodimportantwhen
consideringtermination.19Asimilarstudyfoundthatphysiciansplacemore
importanceonthevalueoffutureyearsofsurvivalratherthanonshorterterm
survival,whichmayconflictwithparents’views.33
InformationonTermination
Inaround70countriesworldwide,terminationofpregnancyforfetalanomalies
(suchasCHD)inthesecondtrimesterislegal.34Inthesecountries,couples
receivingaprenataldiagnosishavetheaddedoption(andburden)ofconsidering
terminationoftheirwantedpregnancyandoftenhaveonlyweeksordaysto
makethedecision.Itisapparentthatdecisionmakingwhenchoosingwhetheror
nottooptforpregnancyterminationismuchmorecomplexthansimplythatof
consideringCHDseverity.Thisoftentime-pressureddecisionishighly
dependentontheparents’religiousandethicalviewsaswellastheirperceptions
andunderstandingofthemedicaldiagnosis,thepredictedshort-andlong-term
prognosis,andthechild'sexpectedQOL.AmulticenterstudyinFrancefound
thattheimportantfactorsinparentdecisionmakingregardingterminationwere:
gestationalageatdiagnosis,ethnicity,achromosomalanomaly,andseverityof
theCHD.35Terminationofpregnancyratesvaryconsiderablybycountry,with
publishedterminationratesforsingleventricleanomaliesrangingfrom12%in
theUnitedStatesto79%insomepartsofEurope.36Thismaybeduetotiming
ofprenataldiagnosisandapplicablelawsontermination,inadditiontocultural
andreligiousviewsregardingtermination.Pastreproductiveexperiences
includingneedforassistedreproductionandmultiplepregnancylossesmayalso
impactdecisionsregardingpregnancycontinuation.
Whenterminationofpregnancyisnotalegaloption,coupleswillsometimes
choosetotraveltoanareawhereitislegalorareobligedtocontinuewiththe
pregnancy.Thefocusoffetalcounselinginthesecountries,andinpregnancies
wherethecoupledeclinetermination,mustswitchtoprovidinginformation,
support,andplanningforneonatalmanagement.Theuppergestationalageat
whichterminationofpregnancyislegalalsovarieswidely,whichmayalterthe
urgencywithwhichcouplesmustreceiveandprocessinformation.37
