I was 16 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 47XXX. 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 in Concord, Massachusetts, 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 “Withdrawn.”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The genetic counselor insisted that the information we had gathered over the weekend was outdated and biased.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 All of the children had suffered learning disabilities, delayed motor skills, were withdrawn, and had required special education. They told us how exhausting it was, how expensive raising a handicapped child. They spoke about mortgaging their home, and going into debt to afford the special care they needed for their XXX child. They spoke of the constant heartache watching their child suffer with depression, anger, loneliness, growing up both physically and academically challenged. But all the parents claimed they 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. At just 4 months, an insentient collection of cells inside me, she was still an abstraction, even though on ultrasound I had seen her entire body, the emerging vertebrae of her backbone, the two hemispheres of her brain, the protrusions of tiny feet and hands. “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, spending the rest of my life watching her struggle to fit in, feel accepted beyond our family, focusing every day on the care of a handicapped child, seemed overwhelming. The cost of raising kids without illness would require both my husband and I to work till we died. And while I’d always pictured having two children, gifting them a sibling, a confident for each other, we’d have to forego having another child to afford the continual care required for our XXX daughter.
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.
This was undoubtedly the hardest decision my husband and I would ever have to make, but it was ours to decide, granted to us alone 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 made 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.
A week later we arrived at a Planned Parenthood clinic in Waltham, and were assaulted by protesters. They held signs that read, “Save Unborns,” and “Choose Life.” They crowded around my husband and I shouting, “Baby Killers!” and “Murderers!,” preventing us from getting into the building until a cop came out and pushed them back. They were amped on self-righteous indignation, full of religious fervor. They’d go home to their Christian conservative families feeling proud of themselves for making our passage into the clinic even more a nightmare than it already was. Most were young, more men than women, in their teens and early 20s, and likely had no children at all. They had no conception of what it took to raise healthy kids, yet alone devote their lives caring for a physically and emotionally afflicted child.
Doubting our own abilities to provide for a sick child pushed us into the decision that to this day, 20 yrs later, I still 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. While I am grateful that the choice was ours to make, the trick is, finding a way to live with that choice.
A year later, and two on that, I was graced with two healthy children, now grown and on their own. But I think of Sierra often, who she would have been, how she would have been, and the lives we would have lead with her. And I still ache for her. Through all the heartache that comes with raising a handicapped child, I know I would have loved her, passionately, wholly, felt that awe-inspiring humility, that magnificent intensity of love for her that I get to feel for my kids every day.