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.
 
Anúncios

Trisomy 13 and 18 and Quality of Life: Treading ‘‘Softly’’

By Lawrence J. Fenton

Not too long ago I was privileged to speak at an annual international conference of the Support Organization For Trisomy 18, 13 and Related Disorders (SOFT). I learned much more than I taught. There were over 200 families there. Approximately half of the families were bereaved parents of a child with Trisomy 13 or 18. (Keep reading it…)