Living With Down Syndrome
I remember an obstetrician friend of mine telling me about a tough decision a patient of hers had to make. She had told her pregnant patient that the tests looked like the baby she was carrying would be born with Down syndrome. The patient and her husband got further confirmation, and talked several times with my friend. It looked like they were going to allow the baby to be born, which really encouraged my friend. Apparently most parents choose to have an abortion, these days. The couple researched lots of information, and seemed ready to face the challenges ahead. But one day the phone calls stopped, and my friend was crushed to learn she’d had an abortion. She never learned what changed her mind.
I wish that patient had been able to hear the results of three surveys from Children’s Hospital Boston which were just published in the American Journal of Medical Genetics. The first survey was sent to parents of a child with Down syndrome. The results?
· 99 percent loved their child
· 79 percent felt their “outlook on life was more positive because of their child”.
· 5 percent felt embarrassed by their child.
· 4 percent regretted having their child.
Previous surveys have revealed that expectant parents of children with Down syndrome are often given a negative description of what life will be like. Parents report they are told about dire medical complications – though most children with Down syndrome live healthy lives.
And what are the feelings of the siblings of the Down syndrome kids? That was the subject of the second survey. Of siblings over 12 years old:
· 94 percent felt proud of their sibling.
· 88 percent felt they were better people because of their sibling.
· 7 percent felt embarrassed by their sibling.
· 4 percent would “trade their sibling in” for another.
And for siblings ages 9-11:
· 97 percent said they loved their sibling.
· 90 percent said their friends are comfortable around their sibling.
So adding a child with Down syndrome to a family is not uniformly tragic and stressful. The opposite seems to be the case.
But how do the people with Down syndrome, themselves, feel? Do they consider their lives worth living? That was the subject of the third study. They surveyed 284 people, average age 23. The results:
· 99 percent said they were happy with their lives.
· 97 percent liked who they are.
· 96 percent liked how they look
· 86 percent said they could make friends easily.
· 4 percent expressed sadness about their life.
Having the perspective of people who are living with Down syndrome, either as themselves or as a family member, is valuable. This needs to be communicated with parents whose unborn baby has just been diagnosed. People with Down syndrome have hopes and dreams. They have friends, and go to school, and get jobs. They have goals and they achieve them. Isn’t that what life is all about for all of us?
