Over the last few days on his blog, Andrew Sullivan has been posting stories on this very topic. I would like to share a few snippets that emphasize just how personal and complex this issue can be.
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.
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.
We were told that the ultrasound suggested strongly that our second child would be born, if she made it that far, with a Trisomy 18 birth defect. There were cysts on her fetal brain that were indicative. Her death before birth or just after was highly likely. If she survived against the odds, it was almost certain that she would suffer from severe birth defects and profound developmental delays.
The news came back good and Meg is 16, wonderful and on her way to a career as an artist. It's not the decision that matters; it's why it's made. It's parents struggling through terrible choices. And their only hope and help is with the doctors. We are all struggling badly to find our way. Perhaps this is the fairest way to understand Dr. Tiller.
My brother and his wife received a diagnosis at the beginning of the second trimester's ultrasound that their child had anencephaly - a condition where the fetus' skull does not completely close and the brain forms partially outside the skull. It is a neural tube defect, similar to spina bifida, but it happens higher up on the body. They were told the child would die before, or shortly after, birth. There was no doubt about the diagnosis. My brother and his wife were encouraged by their doctor to go to Kansas for an abortion, the closest place where they could obtain one in the second trimester.
It was an agonizing decision, but they chose not to have the abortion for religious reasons. The pregnancy went to term and the baby lived for several weeks. She was surrounded by love for the brief time she was here.
I wish I could say unequivocally that they made the right decision, but the long-term effects on my sister-in-law's mental well-being have been serious. She is very much changed from the person that she was before.
Imagine what it is like to walk around in your third trimester, obviously pregnant, while well-meaning people ask you about this baby that you don't expect to be taking home from the hospital. Innocuous comments become incredibly hurtful in this context. Then imagine the baby survives and days later you take home this child who will die. In case you might relax and pretend for a little while that everything is okay, a hospice nurse comes to your house every couple of days and reminds you the signs and symptoms of death. Every time you open the refrigerator you see the narcotics you've been given to ease the baby's suffering once things get really bad.
Eventually, this baby dies a grueling death in your arms and you go home to an empty house. You want another baby, but are paralyzed by the thought of having another child with the same condition, yet you desperately want a child that is related to the child you lost. You find yourself unable to conceive and resentful of those who have many healthy children so easily. The infertility takes its toll on your marriage. The suffering and injustice takes its toll on your faith.
Sullivan has other testimonials on his blog that I encourage you to look at and that should remind us that while this is very much a public issue, the tough decisions are intensely personal.