Children With Trisomy 13 and 18 and Their Families Appear Happy
[Source: Science Daily]
Children with trisomy 13 or 18, who are for the most part severely disabled and have a very short life expectancy, and their families lead a life that is happy and rewarding overall, contrary to the usually gloomy predictions made by the medical community at the time of diagnosis, according to a study of parents who are members of support groups published July 23 inPediatrics. The study was conducted by Dr. Annie Janvier of the Sainte-Justine University Hospital Center and the University of Montreal with the special collaboration of the mother of a child who died from trisomy 13, Barbara Farlow, Eng, MSc as the second author.
The study interviewed 332 parents who live or have lived with 272 children with trisomy 13 or 18. It turns out that their experience diverges substantially from what healthcare providers said it would be, according to which their child would have been “incompatible with life” (87 %), would have been “a vegetable” (50 %), would have led “a life of suffering” (57 %) or would have “ruin their family or life as a couple” (23 %).
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