Kicking the tires before you buy (p. 71)

Just as one would take a car off to one's own mechanic before purchasing, some potential adopters take the baby in for testing before final papers are signed. in a thoughtful and wide-ranging panel discussion on the ethics of genetic testing in adoption...a number of issues arose. One, of course, was the parity with prenatal testing: if parents by birth can test for and avoid a particular condition, then surely adoptive parents have equal rights, too?

... One participant in the discussion...compared this kind of testing with kicking the tires of a used car, or... taking a used car to one's own mechanic before buying it.

I don't think I know anyone who subjected their baby to extra testing or genetic screening before an adoption. But I do know that when our adoption agency called us with a possible match with Yehva's birthmother, they were honest with us about K.'s drug use. "She denies drinking," the director said, "and I'm inclined to believe her. Most people tend to choose one or the other--pot or booze. Of course, you don't have to make a final decision until after the baby is born; you'll be able to get medical information then and see how she's doing."

I got off the phone feeling a bit uncomfortable with the idea that we could change our mind about this baby after she was born and we were able to find out whether she seemed "defective" or not. A friend of mine described to me, a few months ago, one of her conversations with her daughter's birth mother, saying, "we told her we were committed to the baby, so long as it didn't have any disabilities we felt we couldn't deal with."

That sounds crappier than I mean it to--I don't mean to pick on my friend at all, only to say that this is one of the realities of adoption: that you get to meet the baby before you make a commitment. It's a luxury biological parents don't have.

I didn't want to face that decision, and was glad we dodged it by virtue of Yehva being perfectly healthy and sound. I did not want to discover that I was a person who would discard a baby for imperfection. And yet, at the same time, I recognize the many forces that would go into the decision, and sympathize with any parent who chose not to proceed with an adoption. Let me tell you a story.

When I was pregnant with Eric, I could not imagine terminating the pregnancy for any reason. I had an acquaintance who'd carried a baby to term knowing he wouldn't survive long past birth; he spent his entire short life outside the womb cradled in her arms and died peacefully there. I could see myself making that choice, too. I could not imagine myself terminating a baby for having Down Syndrome, or even more severe disabilities. David and I are committed to disability rights and generally comfortable with disabled people; we, especially David, would be good parents for a disabled child.

And then I got pregnant with Carl, and I felt differently, for a couple of reasons. One was that I was 38 years old and really wanted a second child. If I waited out a doomed pregnancy, and then waited to recover enough to try again, I might significantly reduce, or lose, my chance for a second baby. The second time around, I probably would have terminated a pregnancy if had I learned the baby could not survive past birth.

But the disability question became more vexed as well. I had a child already, and a responsibility to him. What if I found out my second child had a disability that would require extraordinary care, a hugely disproportionate measure of our resources of time, energy, and money? Again, with Eric in the picture, the equation shifted. I didn't know what I would do--I didn't think, "Oh, I would definitely have an abortion in those circumstances." But I didn't think anymore that I definitely wouldn't either. A family that learns the baby they plan to adopt is severely disabled has similar factors to weigh, as well as listening to their hearts. This doesn't make them bad people.

No one is allowed to make a binding commitment to adoption until after the baby is born; in most states, there's a waiting period after the birth before the birthmother can surrender her parental rights. And adoptive parents aren't committed until later than that. Even after we'd taken legal custody, when it became clear that problems with our home study were going to delay our clearance to bring Yehva home to Michigan (she and I spent two weeks and about $3000 correcting the problems, during which we had to stay in Illinois), the director of our agency asked me, "Do you want to give her back?" I was affronted. "We didn't promise to be this baby's parents only as long as it was convenient and didn't cost money," I fumed to friends.

But we could have. At some point--finalization, maybe? I don't really know-- the commitment is irreversible, it becomes the same commitment biological parents make. Of course, the commitment becomes irreversible in our hearts long before it reaches that point legally. But the gap between the birth and that point of no return introduces the possibility for adoptive parents to look for perfection, for the baby who is not inconvenient and doesn't cost money.

Both prenatal testing, and the evaluation after birth of babies placed for adoption, cut two ways. On the one hand, they allow parents, both biological and adoptive, to opt out, at least some of the time. On the other hand, they make the birth or the adoption of a disabled child, or one with a genetic predisposition to disease, a choice.

Rothman goes on to say, "In other words, it's not just that parents can choose not to raise a disabled child; it's that they can be judged for doing so."

I have seen this in action second-hand, in the community reactions to a couple who had a third child while their first was in treatment for leukemia. The new baby was severely disabled, and there seems to have been little compassion in many people's responses. Rather, there was a mix of "what business did they have having another baby," and "they got what they deserved." I have actually heard people say, "How did a baby like that get born, in this day and age?" about disabled children. That thought actually went through my own mind when I met a family at the park whose youngest son had no arms or legs.

This has gone all over the place, as so many of these entries seem to. But you see how tangled the skein is--pull on a thread and you don't know what you're going to get. I thank you for thinking about this with me.