A study of parent members of a trisomy 13 or 18 children support group has now revealed that although these mostly severely disabled children only have a very short life expectancy, their families nevertheless lead an overall happy and rewarding life, contrary to the medical profession's common gloomy predictions at the time of diagnosis.
The study, published in Pediatrics was conducted by Dr. Annie Janvier of the Sainte-Justine University Hospital Center and the University of Montreal with special collaboration of the study's second author, Barbara Farlow, Eng, MSc who is the mother of a child who died from trisomy 13. Both experts sometimes give joint talks on the subject of trisomies 13 and 18.
Due to the rarity of trisomy 13 or 18 cases, i.e. one case in around every 10,500 births, the team recruited the parents via online support groups.
The study involved a survey of 332 parents who live or have lived with 272 children with trisomy 13 or 18 and revealed that their experience vary significantly from the information they received from healthcare providers.
According to this information, the parents were told that 87% said their child would be "incompatible with life", whilst 50% stated their child would be "a vegetable" and 57% said the child would have led "a life of suffering". 57% of healthcare providers said a child with these disabilities would have "ruin their family or life as a couple" (23 %).
Children with trisomy 13 or 18 usually receive palliative care at birth, and those parents who chose to continue the pregnancy or want life-prolonging interventions for their child are often subject to prejudices of the medical system. The surveyed parents reported that caregivers often see their child as a "a T13" or "a lethal trisomy" infant rather than a unique baby.
Dr. Annie Janvier, a neonatologist and co-founder of the Master's program in Pediatric Clinical Ethics at Montreal University says: "Our study points out that physicians and parents can have different views of what constitutes quality of life."
More than 97% of the surveyed parents feel or felt that regardless of how lone their child lives or lived, it was/is a happy baby and enriched the family's life and their life as a couple.
Dr. Annie Janvier adds: "In the medical literature on all handicaps, disabled patients - or their families - rated their quality of life as being higher thancaregivers did."
Parents, whose baby is newly diagnosed with trisomy 13 and 18, who join a parental support group often adapt a more positive image of the diagnosis compared with the predictions of the medical profession. The majority of surveyed parents reported that the support group helped them to see their experience in a positive light.
Barbara Farlow concludes:
"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."
Written by Petra Rattue