Parents and doctors see trisomy differently

August 1, 2012

Parents of children with trisomy 13 and trisomy 18 who participate in support groups view their children's situation more positively than do medical professionals.

Parents of children with trisomy 13 and trisomy 18 (T13-18) who participate in support groups view their children's situation more positively than do medical professionals, a new study suggests.

Only 6% to 12% of children with T13-18 live longer than a year, and survivors have severe neurodevelopmental disabilities. Health care providers generally do not advocate intervention, which can provoke disagreements with parents. Parents may seek out support groups for information.

In a survey of 332 members of parent support groups in the United States and abroad regarding 272 children with T13-18, 87% of parents said medical providers told them that their child's condition was incompatible with life; 57% were told that their child would lead a life of suffering; 50% were told that the child would be a vegetable; and 23% were advised that the child would damage their family. Some providers also said, however, that the child might enrich the family, live a short meaningful life, or survive for many years. Of parents who requested full medical intervention, 37% reported feeling judged.

The researchers conclude that parents in support groups may develop a positive view of their child's quality of life at odds with the prevailing interpretation among medical providers. Better understanding of the parental viewpoint may aid communication and decision making, they say.

Janvier A, Farlow B, Wilfond BS. The experience of families with children with trisomy 13 and 18 in social networks. Pediatrics. 2012. Epub ahead of print.