It’s So Personal: Not Knowing For Sure

When I was pregnant with my second child, this is what happened to me. I was in the middle of the "feel good" sonogram at 21 weeks when the technician made a funny face and said that she was having difficulty getting some measurements.  Her supervisor came in and took over, after asking me whether I had any other children and whether they were normal.  And then I spoke with the radiologist, who was blunt and dour, and helped me get an immediate referral to Children's Hospital, where, several specialized sonograms later, we got as grim a verdict as I could possibly have imagined:  a severe brain defect, a severe heart defect, other highly unusual but not easily interpreted "signs" of impairment, including structural or neurological deficits associated with swallowing and other motor functions.  It all pointed to chromosomal anomaly, but, too bad for me, it wasn't possible to get definitive diagnosis in the time frame I had to make up my mind to obtain a legal termination.

My choices were to do nothing, undergo termination with less than definitive diagnosis, or wait for the definitive diagnosis, and then go to New York or Colorado, or, I guess, Kansas.

Technology has made the chromosomal test a lot quicker than it used to be. My doctor was very helpful — telling me to consider what I would do if the amnio cam back normal, because even if chromosomally normal, we were looking at a grim prognosis. I also had the help of a genetics counselor who told me that she often found herself in the position of trying to keep people from overreacting in the face of alarming information — accentuating the positive, if you will, but she had to admit that in my case, there was no positive information. So we did what we could to sort out the information we had, and we realized that there was almost no chance that the baby would live.

If she lived at all, she was destined for debilitating and probably inexplicable pain and suffering (at least three and probably more major surgeries), and a short life. There would never be any surgery for her brain defect, and if she was chromosomally abnormal, most doctors would refuse to do surgery, and she would simply be allowed to die. When we scheduled the termination, they did an amnio to get the definitive diagnosis, which turned out to be a rare and unsurvivable trisomy (#22 if you are interested — it is so rare that the geneticist got a little excited because she had never personally seen it). The last time I saw her on the sonogram screen, her heart rate had decelerated to below 100, which is abnormal for a fetus. I believe that she was sustained as far as she was by me, and that she was already starting to die.

I was haunted for a while that I had to decide before I knew for sure that death was inevitable, and once I got over the grief of having done that, the experience only deepened my belief that abortion should be the province of individual men and women. I think I speak for a lot of people when I say that I have concluded that a decision to undergo abortion or continue a pregnancy is often made instinctively, with a nearly primal conviction that it is the right thing to do under the circumstances. Trying to impose a rigid moral framework based on an extreme notion of equality of personhood doesn't even begin to speak to the complexities of what most people experience when trying to decide this question for themselves.