Children born with the rare genetic disorders trisomy 13 or 18 can have severe symptoms such as developmental issues, congenital heart disease, a small head, cleft palate, and most don’t live beyond a year. However, a study finds that families with trisomy children are often happy and believe their children enriched their lives.
Researchers surveyed 332 parents about their 272 children who had been diagnosed with trisomy 13 or 18. The parents were asked about how their children were cared for, as well as their quality of life and that of their children.
The disorder causes extra copies of genetic material from chromosomes 13 and 18 to appear, causing defects. Variations in the disorder affect the severity of symptoms. Bella Santoum, the four-year-old daughter of former Republican presidential candidate Rick Santorum, has trisomy 18.
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Parents reported many positive experiences with their children. Among 187 parents whose children died, 89 percent said that overall, their child’s life was positive. Nearly all 159 parents whose child lived past three months said that child enhanced their lives. Among all parents, only 3 percent said their marriage ended since the diagnosis, and 68 percent said the child had a positive influence on their relationship.
On the negative side, among those 159 parents whose children lived past three months, half said their children experienced more pain than other children, and half also said that taking care of a child with special needs was more challenging than they imagined.
Parents’ views of how the health care profession regards trisomy weren’t so rosy. More than a third of parents (37 percent) who chose a medical intervention for their child felt they were judged. Among those parents, 87 percent said that post-diagnosis, a health care provider told them their child was incompatible with life, 57 percent were told their child would live a life of suffering, half were advised the kids would live a meaningless life and half were told it would ruin their marriage.
However, 63 percent of parents also said they met a special health care provider who helped them.
The study authors also found that parents who joined a support group often had a brighter outlook on the situation than what the medical community predicted.
“Our study points out that physicians and parents can have different views of what constitutes quality of life," said lead author Dr. Annie Janvier of the University of Montreal in a news release. The study was released online today in the journal Pediatrics.
Has a child with special needs enriched your life? Tell us about in the comments.
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Jeannine Stein, a California native, wrote about health for the Los Angeles Times. In her pursuit of a healthy lifestyle she has taken countless fitness classes, hiked in Nepal, and has gotten in a boxing ring. Email Jeannine | TakePart.com