Families Happy Despite Severe Needs
Even with the severe disabilities associated with two rare chromosomal disorders, a new study finds that parents raising kids with the conditions say the experience is positive.
In fact, in interviews with 332 parents who have lived with children with trisomy 13 or 18 — two disorders marked by severe disabilities and a short life span — 97 percent said their kids were happy and enriched their lives.
The findings reported in the August issue of the journal Pediatrics come in sharp contrast to the predictions that families said they were offered from the medical community.
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Parents indicated that they were told that their children would be “incompatible with life” and would lead a “life of suffering.” Some parents also said that professionals told them that having a child with trisomy 13 or 18 would “ruin their family or life as a couple.”
“Our study points out that physicians and parents can have different views of what constitutes quality of life,” said Annie Janvier, a neonatologist at the University of Montreal who led the study.
Researchers said they are hopeful that their findings will change the way that doctors communicate with families whose children are diagnosed with severe disabilities.