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The Experience of Families With Children With Trisomy 13 and 18 in Social Networks

Authors

Annie Janvier, MD, PhD, Barbara Farlow, BEng, MBA, and Benjamin S. Wilfond, MD

Key Words

trisomy 13, trisomy 18, life-sustaining interventions, quality

Abstract

Background

Children with trisomy 13 and trisomy 18 (T13-18) have low survival rates and survivors have significant disabilities. For these reasons, interventions are generally not recommended by providers. After a diagnosis, parents may turn to support groups for additional information.

Methods

We surveyed parents of children with T13-18 who belong to support groups to describe their experiences and perspectives.

Results

A total of 503 invitations to participate were sent and 332 questionnaires were completed (87% response rate based on site visits, 67% on invitations sent) by parents about 272 children. Parents reported being told that their child was incompatible with life (87%), would live a life of suffering (57%), would be a vegetable (50%), or would ruin their family (23%). They were also told by some providers that their child might have a short meaningful life (60%), however. Thirty percent of parents requested “full” intervention as a plan of treatment. Seventynine of these children with full T13-18 are still living, with a median age of 4 years. Half reported that taking care of a disabled child is/was harder than they expected. Despite their severe disabilities, 97% of parents described their child as a happy child. Parents reported these children enriched their family and their couple irrespective of the length of their lives.

What's known on this subject

Trisomy 13 and 18 are conditions with 1-year survival rates of less than 10% and have traditionally been treated with palliative care. There are increasing reports of ethical dilemmas caused by parental requests for clinical interventions.

What this study adds

Parents who belong to social networks report an enriching family experience and describe surviving children as happy. Many of these parents describe challenging encounters with health care providers.

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"Your Child" - Linda canção consoladora e motivadora

Achei esta canção de Jeniffer Shaw extremamente consoladora e motivadora para que cada pai e mãe continue amando seus filhos, com todo cuidado e zelo, à semelhança de Deus para conosco.

Your Child


Letra

She's up at six a.m. to dress and feed him
She helps him from the wheelchair to the van
And drives the fifty miles to his appointment
And the next day she will do it all again
I asked her how she does it everyday
How do you keep on going with such grace?

And she said, "When those eyes are looking up at mine
Every trial, every fear in that moment disappears
And you realize that it's all worthwhile
When it's your child."

They haven't slept since 2007
Since the doctor placed that baby in their arms
Daddy's working days and nights and on the weekends
And you wonder how it's weighing on his heart
I asked him how he does it everyday
How do you keep on going with such faith?

And he said, "When those eyes are looking up at mine
Every trial, every fear in that moment disappears
And you realize that it's all worthwhile
When it's your child."

Tradução

Ela se levanta às seis horas para vesti-lo e alimentá-lo
Ela o ajuda da cadeira de rodas a van
E dirige 50 milhas até a consulta médica
E no dia seguinte ela fará tudo de novo
Eu perguntei como ela faz isso todos os dias
Como você continua com tanta graça?

E ela disse: "Quando aqueles olhos estão olhando para o meu
Cada prova, cada medo, naquele momento desaparece
E você percebe que tudo vale a pena
Quando é o seu filho."

Eles não dormem desde 2007
Desde que o médico colocou aquele bebê em seus braços
Papai trabalha dias e noites, também nos finais de semana
E você se pergunta como está seu coração
Perguntei-lhe como ele faz isso todos os dias
Como você continua com tanta fé?

E ele disse: "Quando aqueles olhos estão olhando para o meu
Cada prova, cada medo, naquele momento desaparece
E você percebe que tudo vale a pena
Quando é o seu filho."