Researchers found that families of children with trisomy 13 and 18 -who have severe disabilities for most part of their very short life- consider their life to be rewarding.
The study challenges the idea of what health practitioners call "quality of life" and what parents of these children feel about their life.
For the study, researchers interviewed 332 parents who lived or live with a child diagnosed with T 13 or 18. They found that the parents' experience with the child differs greatly from what the health practitioners had predicted. The parents were told that their child would "ruin their life" (23 percent), "be a vegetable" (50 percent) and "incompatible with life" (87 percent).
According to the researchers, 97 percent of the families they interviewed said that their child was happy. Parent's felt that the child enriched their life.
Trisomy 13 and 18 is a very rare disorder that leads to severe complications and early death with 50 percent of patients dying within a week after birth and almost 90 percent dying within a year. Research says that there have been just 6 documented cases of children who have lived for 10 years with the disorder.
According to a study published in the journal Pediatrics, children born with trisomy 13 or 18 in the U.S. receive intensive care at hospitals and many continue to live beyond a year with the help of specialized treatments.
It is possible to diagnose the disorder during pregnancy and most families (98 percent) decide to terminate the baby.
"Our study points out that physicians and parents can have different views of what constitutes quality of life," said Dr. Annie Janvier, a neonatologist and co-founder of the Master's program in Pediatric Clinical Ethics at the University of Montreal and lead author of the study.
"In the medical literature on all handicaps, disabled patients – or their families – rated their quality of life as being higher than caregivers did," added Dr. Annie Janvier.
Recently, there has been an increase in the number of families who decide to continue with the pregnancy.
"Our research reveals that some parents who chose a path to accept and to love a disabled child with a short life expectancy have experienced happiness and enrichment. My hope is that this knowledge improves the ability of physicians to understand, communicate and make decisions with these parents," said Barbara Farlow, Eng, MSc, second author of the study and a mother of a child who had trisomy 13.
Published by Medicaldaily.com