What Is Having A Child With Down Syndrome Like? The Answer May Surprise You.

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A new blood test will enable couples to learn early in their pregnancy if their child has Down syndrome. It should be available within months. So imagine that you take this test and find out your child has an extra chromosome. How would you feel? What would you be curious about?

Most of us would worry both about what life would be like for a child with Down syndrome but also how it would affect our life. That seems reasonable. And just like any other group of people, if you don’t know anyone with that trait, you’re operating with limited information.

A new review of three surveys conducted by doctors at Children’s Hospital in Boston suggests something that many might find surprising: For the overwhelming majority of parents, siblings and people with Down syndrome, life with it is quite positive. The study, published by lead author Dr. Brian Skotko in the American Journal of Medical Genetics was designed precisely to better inform expectant parents and clinicians providing prenatal care. I’m somewhat surprised that such a study hasn’t been done before but the fact that some 90% of children with Down syndrome are aborted probably made the medical and Down syndrome community realize that misconceptions were a serious problem.

Anyway, among over 2,000 parents surveyed, 80 percent said their outlook on life was more positive because of their child. Among siblings 12 and older, 97 percent expressed feelings of pride in their sibling with Down syndrome and 88 percent were convinced they were better people because of their sibling.

One of my favorite babysitters for my children was the younger sister of a man with Down syndrome and she reported similar findings. She was immensely proud of her brother, felt that he had brought joy to the entire family and had strengthened her parents’ marriage.

A study of adults with Down syndrome reported that 99 percent were happy with their lives, 97 percent liked who they are and 96 percent liked how they looked. Sample quote:

“I love my life 100 percent,” says Melissa, explaining that her brothers’ and sister’s friends are her friends, too, and she accompanies them on outings and vacation. “I love my life for the things I do, and the places I go. We are one happy, loving family.”

I grew up in a small town that had a home for people with mental disabilities just down the road. My parents would take my siblings and me to volunteer there weekly and we became lifelong friends with many of the residents, even after the trend toward independent living caused the facility to change its operation. I am pretty sure that even just this minimal contact improved my life immeasurably and improved my attitude and how I treated others around me.

From the MSNBC story, we learn that the lead author has a 31-year-old sister with Down syndrome and that she was the inspiration both for his practice and research on the condition. He said it’s critical that accurate and unbiased information reach families who are expecting a child with Down syndrome:

“Now, we have heard from 3,150 family members around the country on what this is like. This information will be very helpful as women make many personal and profound decisions about their pregnancies.”

Will a study such as this make a dent in a society that is obsessed with perfection, plastic surgery, increased performance? I have no idea.

I don’t know. But while I do know that symptoms of Down syndrome vary by individual and that children with Down syndrome certainly can present serious challenges, this study matches with what some of my dearest friends would report about their experience raising children with Down syndrome.