Parents of Severely Disabled Kids Say They Enrich Their Lives

By Jenifer Goodwin

HealthDay Reporter

Filed Under: Birth Defects / Misc. | Child Development | Computers, Internet / Misc. | Family | Genetic Disorders | Grief | Infant, Child Care | Parenting | Support Groups

Posted: Monday, July 23, 2012, 10:42 AM

MONDAY, July 23 (HealthDay News) -- When Vanessa Hernandez's sixth child was born, she knew right away her daughter was different.

Hernandez's pediatrician wept as she told her the diagnosis. The baby had trisomy 13, a devastating chromosomal abnormality. Most children die before their first birthday and have serious mental and physical disabilities, including heart and breathing problems.

Hernandez's daughter, now 19 months old, hasn't had an easy time. She's had seizures, has a tracheotomy to assist her with breathing and has been fed mostly through a feeding tube.

Despite the hurdles, Isabel is a source of great joy to her family, Hernandez said. Isabel smiles and laughs frequently, and there are no indications she is in pain. Her parents celebrate small achievements. Isabel's five siblings love her fiercely. "She gets the most love in the house. They are very protective of her. Nobody leaves the room without giving her a hug and a kiss," Hernandez said.

Though many people believe that raising child with severe birth defects would be more than they could bear, many parents of children with severe disabilities say that couldn't be further from the truth.

In a new study, nearly all -- 97 percent -- of 332 parents of children with trisomy 13 or trisomy 18, another chromosomal abnormality that can cause similarly severe problems and shortened lifespans, described their child as "happy." Parents also said that no matter how short their lives, their child enriched their family.

"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 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."

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