Voices Across Boundaries Vol.1 No.2: Designer Babies
A Mother's Reflection on Perfection
Down syndrome and society's misguided priorities
by Clare Ferguson
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People born with Down syndrome have 47 chromosomes instead of the usual 46. As children, they are usually smaller than other children, and their physical and mental development is slower. They vary widely in mental abilities and developmental progress, with most of them functioning in the mild to moderate range of developmental disability. Their motor development is slow; and instead of walking by 12 to 14 months as other children do, they usually learn to walk between 15 and 36 months. Language development is also markedly delayed.
Sixty to 80 percent of children with Down syndrome have hearing deficits, and 40 to 45 percent have congenital heart disease. Many of these children will have to undergo cardiac surgery and often they will need long-term care by a pediatric cardiologist. Thyroid dysfunctions are more common in children with Down syndrome (between 15 and 20 percent have hypothyroidism), as are upper respiratory illnesses.
Down syndrome is not related to race, nationality, religion or socioeconomic status. Despite the statistics, with appropriate health care, children born with this disorder can expect to live productive and healthy lives. Most children with Down syndrome live with their families and many are included in regular classroom settings. As adults and young adults, many hold jobs in the community and some pursue higher education at community colleges. All are individuals who make valuable contributions to society.
I was going to begin by stating that the day Russell was born was a day that changed my life forever. Technically, though, that's not true. For almost a full year I remained blissfully unaware that Russell was not "perfect." When he was born, the doctor who delivered him had a suspicion of Down syndrome and asked the pediatrician on call to have a look. Only after the pediatrician had decided that the initial suspicion was groundless did they tell me they had "checked him over, but not to worry -- he's fine." I was happy to accept their diagnosis and I put the issue out of my mind. Not once in the following months did I think that they could have been wrong, and it never came up at monthly medical appointments.
In the course of a regular one-year checkup, my family doctor confessed that she had been "keeping an eye on Russell" and would like to send him for blood tests to confirm Down syndrome. This happened without Russell's father present, and in front of my two older children. To say I was dumbfounded is an understatement. Russell had been delayed in his development, but not noticeably so. The tests were done; Russell was diagnosed with Down syndrome.
Russell's father and I were whisked off to McMaster Medical Centre for genetic testing. This testing seemed to be supremely important to all the doctors involved. How did this happen? What are the chances of its happening again? They took blood from both of us and presented us with all the karyotype possibilities. The mood was sombre and I remember feeling vaguely confused and angry, though I couldn't find a voice to express that. Because of the specific makeup of Russell's chromosomes it was possible that he could have inherited his Down syndrome from one of us. As it turned out, neither of us was "responsible" for Russell's Down syndrome. We now had the same chance of having another baby with DS as any other family that has one child with DS: 1 in 100.
We returned to see the pediatrician who had misdiagnosed Russell at birth. He was extremely nervous, and spent a lot of time listening to the murmur in Russell's heart. About 40 percent of children with DS are born with a congenital heart defect, usually surgically repaired, often in the first year of life -- an opportunity that had passed us by. About twenty minutes into the appointment, after watching the doctor shake and stutter, I said, "You know, Dr. Jones [not his real name], I am not going to sue you." He looked embarrassed, but he visibly relaxed. I couldn't believe it. Here we were trying to find out the medical needs of our baby, and he's shaking in his boots in fear of a lawsuit. I changed pediatricians shortly afterward. Russell's heart turned out to be fine and, on the whole, he is a very healthy little boy.
The full impact of being Russell's mother may not have started at birth but it didn't take long after his diagnosis for me to change my outlook on life. My experience with the medical profession had left me angry and has led me to advocacy. Through Russell's needs, I found a voice to speak up. This continued when Russell started school, and it served me well when I was pregnant with my youngest child.
Having another child was something that I had been wrestling with. I strongly believed that a younger sibling would be good for Russell. Being the youngest of three children as well as being "special" might put too much focus on him. When I described my struggle, most people thought I was crazy. Having a fourth child was seen as self-indulgent, and the question always came up, "What if you have another one?" This came from people I love, who love me. My doctor was fairly blunt in her advice to quit while I was ahead. Still, the pull was strong and I did become pregnant again. Immediately, medical testing became an issue. Never before had I had any sort of screening test, but suddenly it was required. I said no. I then had to sign a form saying I had refused testing. My entire pregnancy felt surreal. Complete strangers, seeing me with Russell, would question my decision to have another child. I got tired of defending what I thought was a personal decision. Eventually I stopped and resorted to blank stares of incomprehension which made them uncomfortable enough to go away.
A few years ago, Chatelaine magazine ran a feature called "Making the Perfect Baby." It was a fairly balanced article but the comments of some of the people interviewed incensed me enough to write a letter to the editor. They seemed to indicate that everyone wants a "perfect" baby and that it is selfish to bring a child into the world who can't enjoy "quality of life." One argument for testing was the early detection of abnormality for easier termination or treatment. Current statistics show the rate of termination in pregnancies where the fetus has been diagnosed with DS is more than 90 percent. Clearly, this is the main reason for earlier and earlier testing. As a parent it makes me sad, not because I don't believe in reproductive choice but because Russell has brought me so much joy. Almost every family I know that has a child with DS talks of the huge amounts of love and joy that surround their child. It saddens me that Down syndrome is still seen as such a deficit that more than 90 percent of people choose not to bring a baby diagnosed with DS into the world.
The completion of the Human Genome Project has engendered exciting possibilities in research and treatment. "Gene therapy" is touted as a cure-all. Down syndrome has been mentioned. If I could reduce, without risky and intrusive treatment, the challenges my son faces as a result of his having DS, I wouldn't think twice. It has been my life's mission to facilitate the best life possible for Russell and I work on it every day through advocacy and education. However, erasing Down syndrome from Russell -- removing all characteristics belonging to Down syndrome but not to Russell -- is impossible. He is a whole person, not a sum of his parts. How do you separate his goofy personality and his huge capacity for love from his terrifying complete lack of fear of strangers? His trust in people is partly a result of his limited intellectual abilities. If you remove the intellectual challenge, does the same person remain? I don't know. Is it even fair of me to impose on Russell my wish for him to stay as he is? How do his rights figure into it? These are very hard questions and, in a way, I'm glad that I won't have to answer them in my lifetime.
It has been a few years since I wrote my highly indignant letter to Chatelaine magazine, and time has tempered my response. However, I find my position on genetic testing unchanged. The focus on eliminating imperfection seems misguided to me. In my opinion, as a parent of a child with a developmental disability, the increasing amounts of money spent on early diagnosis would be better spent on the education and health needs of all children and the education of society towards acceptance of difference. As for Russell, I think I was right ten years ago when I thought he was perfect. He is.
Clare Ferguson is a publicist with Wilfrid Laurier University Press and the book review editor of Voices Across Boundaries. She lives in Kitchener, Ontario.