A new study out of the University of Montreal says that contrary to the dire predictions frequently made by doctors, families of children with trisomy 13 and trisomy 18 report that their lives are happy and rewarding, despite their children’s disabilities and typically short life span.
The study, published in Pediatrics, was unique in that it was authored by Dr. Annie Janvier of the Sainte-Justine University Hospital Center and the University of Montreal with the special collaboration of the mother of a child who died from trisomy 13, Barbara Farlow, MS as the second author.
Trisomies 13 and 18 are rare chromosome disorders that are most often diagnosed before birth and sometimes after. Children who have received these diagnoses generally do not survive beyond their first year of life, while some who do have severe disabilities and a short life. When trisomy 13 or 18 is diagnosed before birth, many parents decide to interrupt the pregnancy, whereas others choose to carry it to term and in such cases miscarriages are common.
Children born with trisomy 13 or 18 are for the most part severely disabled and have a very short life expectancy. The study found that some parents who opt to continue the pregnancy or desire life-prolonging interventions for their child encounter the prejudices of the medical system. Parents interviewed in the study felt that caregivers often view their child in terms of a diagnosis (“a T13,” “a lethal trisomy”) rather than a unique baby.
The parents interviewed for the study said that their experiences diverged substantially from what healthcare providers said it would be, according to which their child would have been “incompatible with life” (87%), would have been “a vegetable” (50%), would have led “a life of suffering” (57%) or would “ruin their family or life as a couple” (23%).
“Our study points out that physicians and parents can have different views of what constitutes quality of life,” stated Dr. Annie Janvier, a neonatologist and co-founder of the Master’s program in Pediatric Clinical Ethics at the University of Montreal. In fact, over 97% of the parents interviewed considered that their child was happy and his or her presence enriched the life of their family and their life as a couple regardless of longevity.
“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.
One factor to consider in this study is that all of the 332 parents interviewed were recruited from support groups –a fact that in itself may have colored the study results. The study authors noted that parents who receive a new diagnosis of trisomy 13 and 18 and join a parental support group often acquire a more positive image of these diagnoses than the gloomy predictions made by the medical profession.
In fact, according to the parents interviewed, belonging to a support group helped them view their experience positively. “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,” concludes Barbara Farlow.
Support and advocacy groups include The Trisomy 18 Foundation, which offers parent message boards, and has an active Facebook page; and the Support Organization for Trisomy 18, 13, and Related Disorders (SOFT), which also has an active Facebook page.
The study authors said that trisomy 13 or 18 disorders occur in approximately 1 in every 10,500 births.
(Photo Credit: iStockphoto)
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