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. Seventy-nine 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. CONCLUSIONS:Parents who engage with parental support groups may discover an alternative positive description about children with T13-18. Disagreements about interventions may be the result of different interpretations between families and providers about the experiences of disabled children and their quality of life.
journal_name
Pediatricsjournal_title
Pediatricsauthors
Janvier A,Farlow B,Wilfond BSdoi
10.1542/peds.2012-0151subject
Has Abstractpub_date
2012-08-01 00:00:00pages
293-8issue
2eissn
0031-4005issn
1098-4275pii
peds.2012-0151journal_volume
130pub_type
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