Andersons pediatric cardiology 277
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similardiagnosis,inordertosharetheirexperiences
andprovidesupport,althoughphysiciansmayprefer
towaituntilacouplehasdecidedtocontinuewiththe
pregnancybeforedoingthis.Informationonsupport
groupsmayalsobeappropriate.
▪Makereferralsforadditionaltesting(e.g.,obstetric
ultrasound,amniocentesis,fetalmagneticresonance
imaging),counseling,andsupport—including
genetics,perinatology,palliativecare,socialwork,
andpsychologyasappropriate.
▪ItiscrucialthatinformationregardingthefetalCHD
diagnosisandthecontentofthecounselingare
availabletothewoman'scareteam,includingher
familydoctor,obstetrician,andmidwives.Wehave
founditveryusefultosupplythewomanwithacopy
ofherscanreport,sothisinformationcanbesharedif
itcannotbereadilyaccessedbyhercareteam.
WhatShouldBeDiscussedatFollow-Up
Appointments?
Ifpregnancyterminationischosen,itisimportanttoofferfollow-upcounseling
withgriefcounselors,providedetailsofsupportgroups,ensurethatthefamily
doctorisawareofthisoutcome,discusstheimportanceofanautopsy,andto
providefollow-upcounselingwiththefetalcardiologist.Duringthefollow-up
session,anyoutstandingquestionscanbeanswered,autopsyresultsdiscussed,
counselingcanbegivenregardingtheriskofrecurrenceinfuturepregnancies,
andtheofferofearlyfetalechocardiographyforfuturepregnanciescanbemade.
Forongoingpregnancies,thefocustendstoswitchtowardplanningfor
deliveryandthedetailsoflikelypostnatalmanagementstrategies.Itremains
importanttogobackthroughdetailsdiscussedinthefirstcounselingsession,as
repetitionwillaidtheirunderstanding.
Practicalarrangementsshouldbeaddressed,includingwhetherthemother
willneedtorelocateforthedelivery,theanticipateddeliverytype,andlocation.
Parentsrequireinformationaboutwhatwillhappenimmediatelyafterthe
delivery—whethertheywillbeabletoholdthebaby,whetherthebabywill
requireanyemergencyprocedures,wherethebabywillgotoafterthedelivery
room,if/whenthemotherwillbeabletobreastfeed,whenthefirstpostnatal
echowillbedonetoconfirmthediagnosis,whatextrainformationwillbe
obtainedbythatecho,whatothertestswillberequired,andwhowilldoany
operations/proceduresrequired.
Parentsoftenrequirehelpwithunderstandingthelikelyimpactontheir
financesandchildcare.Theyrequireestimatesforhowlongtheycanexpectto
beawayfromhomeoroffwork.Itisimportanttotry,wherepossible,tomake
plansthatminimizeseparationbetweenmotherandbabyafterdelivery,asthisis
acrucialtimeforestablishingbonding,whichifinterruptedcanhavealongtermdetrimentalimpactonmaternalbehaviors.49Motherswhoareunableto
breastfeedmaybeconcernedabouttheimpactonbondingandbeencouragedto
bondinotherways.Parentsareoftenworriedaboutwhattubesandlinestheir
childwillhaveandappreciateatouroftheneonatalunit,pediatricward,or
intensivecareunitwheretheirbabywillgoafterdelivery.Theyalsoneed
informationregardingaccommodationsforthemandtheirotherchildrenwhen
theirbabyisinthehospitalanddetailsofvisitingpolicies.
Thefetalcardiologyteammustputinplacearrangementsforoptimizingthe
outcomeforthebabyandensurethattheappropriateteamsareawareofthe
plansfordeliveryandmanagementstrategies.Socialworkers,psychologists,and
thenursecoordinatorarekeyindividualsinpreparingtheparentsforlifewithan
affectedbaby.Theparentsmayalsowishforadviceonhowtotelltheirother
childrenthattheyaregoingtohaveababywithCHDandwhatstrategiesthey
canadopttominimizethedisruptionoffamilylife.
Laterinthepregnancy,withinweeksofthedeliveryamultidisciplinarycare
meetingwiththefamilymaybehelpful.Suchameetingwouldallowparentsto
askquestionsaboutthedeliveryandimmediatepostnatalcareincluding
expectednatureandtimingofinterventionandbebetterpreparedforthebirthof
theirchild.Membersofthisteammayincludetheobstetricianormaternal-fetal
medicinespecialist,neonatologist,cardiologist,obstetricand/orneonatalnurse
specialistsfromobstetric,neonatalservicesorboth,andsocialworkers.
Additionalspecialists(e.g.,generalsurgeon,otolaryngologyspecialist)maybe
necessaryiftherearemorecomplexextracardiacpathologies.Aninitialteam
meetingjustpriortoentryofthefamilymaybenecessarytobecertaintheteam
isonthesamepageregardingdeliveryandmanagementplansespeciallyfor
morecomplexpatientsandthoserequiringemergentorurgentinterventionafter
delivery.Ifthefamilyisfromoutoftheregion,involvingtheirprimaryobstetric
clinicianand/orcounselingfetalcardiologistthroughtelehealth,mayprovide
somecomforttotheparentsandkeeptheoutsideprovidersinvolvedinthe
planning.Thisprovidesbettercontinuityofcareforparentsandtheirinfant.
