Foto av Bent Høie og Karin Andersen

Dødelig diskriminering

Stortingsrepresentant Karin Andersen (SV) stilte spørsmål om manglende helsehjelp til barn med trisomi 13 og 18. Svaret fra Helse- og omsorgsminister Bent Høie (H) er trolig utformet i Helsedirektoratet og bærer preg av faktafeil og diskriminering.

Dødelig diskriminering

Av Siri Fuglem Berg, Dr med, forsker, spesialist i anestesi

Flere trisomiforeldre har ropt ut om medisinsk diskriminering av deres barn de siste fire årene. Mange får ikke undersøkelser og behandling til barna sine som ethvert annet barn ville fått, noen klarer å krangle seg til noen tiltak, andre klarer det ikke. Noen må ut på sykehusshopping for å finne leger som er villige til å gi barnet et minimum av tiltak. Dette gjelder ofte der diagnosen er kjent i svangerskapet. Kvinner forteller at de nektes overvåkning under fødsel og keisersnitt for å redde barnet. Høie har nylig fått et spørsmål om dette fra stortingsrepresentant Karin Andersen, etter en reportasje om vesle Ole med trisomi 18 på Lørdagsrevyen den 26. april i år. Høies svar til Andersen er lett å imøtegå, blant annet ut i fra faktafeil og diskriminering.

 

Trisomi 13 ser ikke ut til å medføre økt dødelighet sammenliknet med trisomi 18, slik som påpekt i svaret fra helse- og omsorgsministeren. Kun i tilfeller der barnet har tilleggsanomalien holoprosencephalon, vet vi at det er snakk om økt dødelighet. Der er heller ikke økt dødelighet av trisomi 13 i svangerskapet sammenliknet med trisomi 18 – den ligger på fra 30-70% for begge tilstander, avhengig av studie og tidspunkt i svangerskapet man måler fra. Her er det mye usikkerhet rundt studiene, men de nyere viser lavere dødelighet enn tidligere antatt.

 

Tallene på overlevelse i svaret fra Høie er egentlig uinteressante, de er tatt fra studier der normen er kun lindrende tiltak for babyene – inkludert å avstå fra overvåkning og mulighet for keisersnitt under fødsel, avstå fra livreddende tiltak på fødestuen, og en del steder avstår man endog fra medisinsk hydrering og næring, selv om mange av barna er for svake til å klare å ta til seg nok næring selv den første tiden [1-11]. Dødeligheten for ”normale” barn hadde også vært markant, dersom de ble behandlet på samme vis.

Foto av Siri Fuglem Berg

Siri Fuglem Berg er selv lege. Datteren Evy Kristine hadde trisomi 18 og fikk leve i tre dager. I ettertid har Siri Fuglem Berg arbeidet iherdig for å sikre barn med trisomi 13 og 18 et helsetilbud som er likeverdig med det andre barn får (Foto: Nina Ruud)

 

Når det gjelder forekomst, vil det for hvert 3. til 4. Barn med Downs syndrom fødes et barn med trisomi 18. Tall fra litteraturen ligger på fra 1:3000-1:8000. Trisomi 13 er noe sjeldnere igjen. Problemet til denne gruppen pasienter er at tilstanden er hyppig nok til at legene har laget seg regler om at de ikke skal behandles, mens andre babyer med sjeldne og alvorlige tilstander ikke møtes med samme fordommer. Fordommene og forskjellsbehandlingen er velkjent og mye diskutert i internasjonal medisinsk pediatrisk bioetisk litteratur [12-22]. Leger er opplært til at diagnosen er dødelig, at det er uforenlig med liv, og at barna ikke har noen mental funksjon, noe som er helt feil. Det blir dessverre til et selvoppfyllende profeti når det gjelder trisomibarn [13, 23-25]. Fordommene fører ofte til behandlingsnekt og et fortsatt ønske om å fokusere på kun lindrende tiltak, uten å se mulighetene for å redde pasientene til et lenger liv. Her spiller nok synet på den mentale utviklingshemning inn, for andre barn med samme odds for overlevelse blir satset fullt på.

 

Nyere studier fra bl.a. Japan sammenlikner grupper med ubehandlede individer med individer som mottar intensiv behandling og mulighet for korrigerende kirurgi, inkludert hjertekirurgi etter individuelle vurderinger. Der øker ettårs overlevelse til rundt 50%, den nærmer seg også 20% ved øsofagusatresi – en tilstand som hos norske trisomibabyer er 100% dødelig i løpet av få dager pga manglende tilbud om tiltak [19, 26-33].

 

Japanske studier viser også at med intensiv behandling dør ikke barna av pusteproblemer, de dør av hjertesvikt dersom hjertefeilen ikke korrigeres. Det kan også se ut som om en andel av dødsfall etter  pustedødene skyldes bløt brusk i øvre luftveier, at ikke alle skyldes et underutviklet pustesenter slik man tidligere trodde (personlig kommunikasjon). Det finnes effektiv behandling for dette.

 

I svaret fra Høie står det at respirasjonsstøtte utover en begrenset periode ikke er vist å bringe barnet over i en mer stabil fase – faktum er at dette vet vi for lite om, men vi vet at mulighet for slik intensivbehandling gir markant økning i overlevelse. Og her bør vel tvilen komme pasienten til gode – og iallfall dersom det er hva foreldrene ønsker.

 

Barnets beste kan ikke vurderes ut fra en medisinsk vurdering, fordi flinke fagfolk er uenige [12-22]. Da er foreldre ofte vel så egnet til å ta avgjørelser på vegne av sitt barn som legene. Og, ikke minst, det er foreldrene som skal leve med konsekvensene av hva som ble gjort eller ikke gjort. Flinke fagfolk ser også barnet ut fra et rent medisinsk synspunkt, og glemmer ofte den sosiale konteksten barnet lever i. Dessuten har leger et mer negativt syn på livet med utviklinghemning enn foreldrene har [34-40].

 

Trisomiforeldre melder tilbake at de ikke ønsker at deres barn skal innlemmes i noe program for lindrende omsorg, de ønsker å ha fokus på livet. Deres behov ligger ofte mer i det lokale støtteapparatet – medisinske kontroller, fysioterapi, barnehage, skole, avlastning. De ser ingen grunn til at man fra fødsel av skal se på barnet som i en dødsfase. Trisomi 13 og trisomi 18 er heller ikke dødelige i seg selv. Mange av følgetilstandene kan være dødelige, men noen av dem kan korrigeres eller støttes medisinsk. Andre vokser de av seg. I tillegg er de utsatt for infeksjoner, men noen er også sterke nok til å overleve diverse RS-infeksjoner og forkjølelser, noen har endog overlevd svineinfluensa.

 

Vi har i Norge individer med trisomi 13 eller trisomi 18 som har levd inn i 20- og 30-årene, i fjor døde en kvinne i en alder av 37. Vi har flere i skolealder, barn som lever gode liv og som kommuniserer på sitt nivå. Igjen – ingen grunn til å se på dem eller behandle dem som døende fra de er født. De dør fordi de ikke får hjelp - med hjelp ville flere reddes, noen til ekstra måneder, noen til ekstra år. Noen kan ikke reddes, og problemet er at man vet ikke ved fødsel hvem som har mulighet til å bli langlevere. Det gjøres sjelden noen form for diagnostikk etter fødsel, for legene har ofte bestemt seg på forhånd at det ikke er håp.

 

All ekstra tid med barnet er av stor betydning for foreldrene, for dem er ikke ett år ekstra lite – det er alt. Så får man heller fokusere på å lindre også parallelt med aktiv behandling. Vi har gode muligheter til det med moderne medisin, intensiv behandling betyr ikke at barnet skal lide.

 

Helseministeren skriver at forutsetning for behandling skal være at den skal være ”kortvarig, kunne lindres, og med rimelighet antas å føre til bedre livskvalitet for barnet.” Men dette skal vel gjelde for alle barn? Man skal vel ikke ha en annen standard for trisomibarn? Det skal da ikke stilles høyere krav til effektivitet eller varighet av behandling hos trisomi-barn enn andre barn? Igjen – de dør tidlig fordi de ikke får hjelp. Med hjelp får de en mulighet til selv å vise hvor sterke de er, hva de er gode for. Noen vil dø på tross av hjelp, men flere vil også leve.

 

Og igjen – det at en arbeidsgruppe jobber for lindrende tiltak der diagnosen oppdages i svangerskapet, betyr ikke at lindrende behandling skal tvinges på vordende trisomiforeldre og deres barn. De skal ha god oppfølging i svangerskapet, men der skal ikke være automatikk i kun lindrende tiltak etter fødsel. Trisomiforeldre rapporterer en voldsom frykt for det nevnte program, de ser ikke hva det har med deres barn å gjøre. De har fokus på at barnet lever, så kan det bli sykt og dø – som alle andre barn. Med større sannsynlighet enn ”normale barn”, men uansett ønsker de å ha fokus på livet, for så å ta sykdom og død når og om det kommer. Lindrende program skal ikke bli noen sovepute, det er nettopp lindrende tiltak som er problemet for trisomi-babyer. De lindres til døde.

 

 

Referanseliste:

 

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7 mai 2014

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