Technology and Choice

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. Although I was aware that my advanced age of 39 increased my risk of potential problems, I was totally unprepared for the results from this technology, and the choice I would have to make.

We received the news on a 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 on the following Monday, I spent the next three days searching for information. I sat in the old, stone 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 “Withdrawn.”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 get more information, except there was little out there, and everyone we spoke with had some kind of agenda.

The genetic counselor insisted that the information we had gathered over the weekend was outdated and biased. 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 for the camera. The doctor then asked us if we would be willing to participate in her study if we decided to “keep our daughter.” 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 on abortion. 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 children. All of the children had suffered learning disabilities, delayed motor skills, were withdrawn, and had required special education. But all the parents loved their daughters.

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.

What kind of person was I that I would kill my daughter because she wasn’t perfect? 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.

It occurred to me that most of us go through life thinking we are generally good, honest, caring people because this view is rarely challenged, as most of our actions aren’t based on critical, pivotal, character-defining decisions. From the moment I got the amnio results, I knew my life would never be the same again. Technology had given me insight and now forced me to make a choice.

Probably the hardest decision of our married life, but it was ours to make in a state where abortion is still legal. Only we, the parents of the pregnancy, could decide what we felt capable of providing our child. If we lived in Texas, the state could force us to give birth to an ill baby, spend everything we make on drugs, specialize schools and care, and damn us to the unbearable torture of watching her struggle daily, likely for the rest of our lives.

Doubting our own abilities to provide for a sick child pushed us into the decision that to this day, 20 yrs later, 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 disabled XXX 8 year old told me that if she had known that her daughter had the anomaly before she gave birth, she doubts 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 okay.

The trick is, finding a way to live with that choice.

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