Parenting severely disabled kids can be a great source of happiness

Published: Friday, July 27 2012 3:01 p.m. MDT

In this photo taken Aug. 28, 2009, Dawn Tosado, right reads a passage from the Bible as husband Eddie holds their 12-day-old daughter, Eliesse Myosotis in their home in Waterbury, Conn. Eliesse was diagnosed with a deadly genetic disorder, Trisomy 18, while still in her mother's womb.

Associated Press

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Regardless of the length of their lives, children with trisomy 13 or trisomy 18 — a chromosomal abnormality that can cause shortened lifespans and severe disabilities — not only led happy lives, but enriched the lives of their families, according to a new study published in the journal Pediatrics July 23.

"Despite the fact that often these children live less than a year and they are disabled, families find they are happy children. They find joy in their children. They enrich the family, enrich the couple and the child's life had meaning," said study author Dr. Annie Janvier, an associate professor of pediatrics and clinical ethics at the University of Montreal. "None of the parents said they regretted not terminating the pregnancy. None said the life was unworthy of living. All of the parents reported the quality of life of their child was a good quality of life."

Among the 332 interviewed parents of children with trisomy 13 or trisomy 18, half of the parents had been told their child would be "a vegetable," and a little more than half had been told their child would lead "a life of suffering." Almost a quarter were told this child would "ruin their family or life as a couple," Daily RX reported.

Dr. Roya Samuels, a pediatrician at Cohen Children's Medical Center in New Hyde Park, N.Y., found the research "eye-opening." "Physicians need to present objective information and statistics on what parents should expect with trisomy 13, 18 or other congenital conditions for that matter. But those numbers, she added, need to be tempered with compassion, an understanding that quality of life is highly subjective and that parents may readjust their own beliefs about what constitutes quality of life after the birth of their child," U.S. News reported.

The only experience some doctors have with these conditions is from textbooks, Fox News quoted Benjamin Wilfond of the Seattle Children's Research Institute at the University of Washington as saying.

"Part of what we would like to do is expand the imagination of the providers — based upon the data that is available — to a range of possibilities for these children," Wilfond said.

Rachel Lowry is a reporter intern for the Deseret News.

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