Technology and Choice

J. Cafesin

I was 17 weeks pregnant with my first baby when the results of an amnio told me that the wanted child I was carrying was not healthy. I have always been pro-choice, and never considered it a moral dilemma to terminate a fetus with severe Down's syndrome, or other life threatening or debilitating abnormalities. I was aware that my advanced age of 39 increased my risk of potential problems, but I was totally unprepared for the results, and the choice I would have to make.

We received the news on a cold, gray, Thursday afternoon in late December that the baby girl inside of me had an extra X chromosome, also known as Trisomy 47,XXX. While waiting for clarification from a genetic counselor the following Monday, I spent the next three days searching the library and the Internet for information. I sat in that library crying uncontrollably with each line I read from a Psychology Today article on XXX. "Severe learning disabilities. . . Severe emotional disabilities. . . Slow motor development. . . Shy. . . Withdrawn. . . ."

I rubbed my swollen belly, trying to feel my daughter inside of me, fear welling up and gathering momentum. My stoic husband sat next to me, silently reading along. On the way home we talked, we cried, we argued about what to do next. We decided to wait to make any decisions until we could gather more data, except there was very limited information out there and everyone we spoke with had some kind of agenda.

The genetic counselor insisted that the information we had gathered was outdated and biased. She only had documented information from three different studies, collectively involving fewer than 20 triple X girls over a period of 15 years. These studies found that XXX girls were generally not mentally retarded, were not physically disabled, and had a normal life span. There was some evidence of delayed motor skills and learning disabilities and they tended to be shyer than other girls. A few minutes later she called in a staff OB/GYN who showed us a picture of a beautiful 8-month-old XXX baby, swinging in her electric swing on a whitewashed, sun drenched porch, smiling happily at the camera. The doctor then asked us if we would be willing to participate in her study if we decided to "keep our daughter."

Hope washed over me and for a moment I let myself believe that my baby girl could be just fine. During the following week we spoke with doctors from around the world with any knowledge of XXX, who gave us a positive or negative spin depending on their personal views. We spoke with a social worker that dealt with the parents of handicapped children, who was subtly but clearly for termination. I solicited advice from my parents. My father (who never changed a diaper in his life) told me to keep her. My mother said not to. We spoke with parents of XXX girls. All of the children had suffered learning disabilities, delayed motor skills, were withdrawn, and had required special education.

A decision had to be made quickly, before I felt her moving inside me. I knew if I felt her I could never give her up. To a certain degree, she was still an abstraction, even though on ultrasound I had seen her entire body, each vertebrae of her backbone, the two hemispheres of her brain, her tiny feet and hands moving about. "The ghost in the machine," my husband had called her. I held my belly and begged my daughter to tell me what she wanted me to do, knowing the decision would be mine, feeling the weight of that decision ripping apart the fabric of my tightly woven self-image.

It occurred to me that most of us go through life thinking we are generally good, honest, caring people. But this view is rarely put to the test because most of our actions aren't based on critical, life-defining decisions. From the moment I heard that my daughter wasn't healthy, I knew nothing would ever be the same again. If I had her, I would have to live each day watching her struggle. If I didn't have her, I would have to live each day missing her and wondering what could have been. What kind of person was I that I would kill my daughter because she wasn't perfect? Technology had giving me insight and now forced me to make a choice.

Faced with the probability of a slow child, I realized my expectations for (and from) my children were more than I had considered. Maybe too much. Searching myself and my husband, questioning our capacity for tolerance, assessing our lack of social skills, our advanced age and modest financial position, I wondered if we could give her what she would need.

Fear of the unknown was the catalyst for our decision to terminate the pregnancy. Disappointment in our expectations and doubting our own abilities pushed us into the decision that to this day I find shame in. But I honestly don't know how the other decision would have played out.

One of the mothers of an emotionally and physically disturbed 8-year-old XXX child told me that if she had known that her child had the anomaly before she gave birth, she wonders if she would have chosen to keep her. I guess when we make a decision with no good choices, the decision we make will never be OK. The trick is finding a way to live with that.

© J. Cafesin

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