Even with the severe disabilities associated with two rare chromosomal disorders, a new study finds that parents raising kids with the conditions say the experience is positive.
In fact, in interviews with 332 parents who have lived with children with trisomy 13 or 18 — two disorders marked by severe disabilities and a short life span — 97 percent said their kids were happy and enriched their lives.
The findings reported in the August issue of the journal Pediatrics come in sharp contrast to the predictions that families said they were offered from the medical community.
Parents indicated that they were told that their children would be “incompatible with life” and would lead a “life of suffering.” Some parents also said that professionals told them that having a child with trisomy 13 or 18 would “ruin their family or life as a couple.”
“Our study points out that physicians and parents can have different views of what constitutes quality of life,” said Annie Janvier, a neonatologist at the University of Montreal who led the study.
Researchers said they are hopeful that their findings will change the way that doctors communicate with families whose children are diagnosed with severe disabilities.
THIS is exactly the message we need to be getting out to the medical profession and, by extension, the rest of society. There’s a great pic going around FB showing a cute little girl (4 or 5 years old) that says “Here’s the thing: I have a really awesome life. There’s no prenatal test to measure that.”
Wow! It took a study to uncover those findings? Absolutely medical staff need additional training. When I received the diagnosis that my unborn child would have Trisomy21 (Down syndrome), there were many “professionals” that suggested – no, nearly insisted – I terminate the pregnancy. This was not in 1950, but the late 90′s, and there was no condition incompatible with life. Then, the head of genetics at a renown children’s hospital stood at his crib in the NICU and told us never to expect this child to walk or talk or do anything like a “normal child.” This lack of compassion and updated knowledge could be the reason that 90% of babies with Down syndrome are aborted. I cannot speak for families of children with other disabilities, but had we listened to these ignorant (in the true sense) individuals, we would have missed out on a world of unspeakable joy, pride, and love. Are there challenges? Health issues? Fear? Sure. Is my child perfect? … which child is? A family is no less happy or fulfilled because of medical issues…only how it decides to handle and accept them. Instead of conducting studies like this, why not use the money and resources to – I don’t know – do research on these anomalies or find ways to help the families who “aren’t unhappy”? Or better yet, do some sensitivity training for those delivering the news to the families who actually will be raising the child.
I believe a special needs child is one of God’s greatest blessings. My son has cp spastic quadripilegia and is non ambulatory. So we have some limitations..of what you would consider “normal”. BUT and that’s a big old BUT…we celebrate each and every day that he is with us. Maybe we live a little bit differently but our lives are enriched by this beautiful child not “ruined” in any way. He is embraced by his school, his community and his church and he gives back what he receives with his wit, charm and sense of humor. His smile radiates enough to light up a room and touches everyone he comes to meet. I would not change one single thing about this child or our lives. If you’re the parent of a special needs child you know exactly what I’m talking about. We were given the choice of whether we actually wanted to bring my son home with us from the NICU! We were told, feeding tubes, seizure disorders, chronic respiratory issues, blindness, non ambulatory, mental retardation and so many other things were to be considered. “quality of life” would be greatly diminished etc. Are you kidding me! Needless to say that he’s here with us where he belongs but there wasa set of twins who’s parents chose otherwise. It broke my heart. I just got done dancing around my kitchen while my son sat and rocked out singing some Guns N Roses! ~ he’s my 80′s throwback kid :) Yea he’s in a chair, no his speech isn’t perfect and he’ll always be in diapers, but life is good here!! Study be damned!