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For Parents Facing a Difficult Diagnosis, Social Networks Can Give a Different Picture than Doctors

7/23/2012 For Release: July 23, 2012
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Trisomy 13 and 18 (T13-18) are conditions caused by chromosomal defects. According to a study in the August 2012 issue of Pediatrics, “The Experience of Families With Children With Trisomy 13 and 18 in Social Networks,” published online July 23, parents’ experience of having a child with Trisomy 13 or 18 can differ profoundly from the conventional view within the medical community. Most (90 percent) of the children with these conditions will die before their first birthday (in many cases, shortly after birth) and survivors have significant disabilities. Infants born with these conditions traditionally are treated with palliative (comfort) care. The authors surveyed parents of children with T13-18 who belong to online support groups to describe their experiences and perspectives. A total of 332 parents answered questions about their 272 children. Parents reported being told by providers at the time of diagnosis that their child was incompatible with life (87 percent), would live a life of suffering (57 percent), would be a vegetable (50 percent) or would ruin their family or marriage (23 percent). However, they were also told by some providers that their child might have a short meaningful life (60 percent). In contrast to what many were advised, almost all parents in this study reported a positive view of family life and the quality of life of their child. These parents described surviving children as happy and stated that they were able to communicate with them to understand their needs. Yet at the same time, parents acknowledged that there were significant financial sacrifices and that their children experienced more pain than other children. It appeared that interventions prolonged the life of some, but not all, of the children. Parents who join social networks are likely to gain knowledge of a wide range of choices and outcomes. The authors note that parents whose children survive for at least a year may be more likely to join T13-18 social networks. They concluded that parents of children newly diagnosed with T13-18 who become involved with social networks may adopt views, hopes and expectations that are inconsistent with those of some of the health care providers they will encounter. Understanding this may facilitate communication and decision-making between parents and providers.

Editor’s Note: This study is a unique collaboration between parents and physician. The second author of the study is the mother of a child who died with trisomy 13. 

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The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults. For more information, visit www.aap.org.


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