Amy Julia Becker is 32 and pregnant, she has two children one of whom has Down syndrome. In an essay written for Lisa Belkin’s Motherlode blog, she writes about her decision not to screen or test for chromosomal abnormalities, including Down syndrome, for her current pregnancy. When I read this piece all of my own anxiety about prenatal testing flooded back to me.
Becker’s story is an important one. Her experience with an affected daughter has radically changed her ideas about Down syndrome. She writes that according to the medical establishment and even pro-life advocates Down syndrome is something people “suffer.” But she doesn’t feel this way. She’d welcome another child with Down syndrome. I’ve read stories like this before. The parents of children with Down syndrome almost always describe a family life that is very different from what most might imagine.
A good friend of mine has a sister with Down syndrome. I’ve never met her but I’ve heard nothing but good things. And not just, aw, that’s so sweet, she’s a ray of sunshine kind of things, either. She sounds smart and moral and thoughtful and funny and hard-working. She has a job. My friend asked me and my husband quite directly to consider skipping prenatal testing. And we did consider skipping it.
But, as it is for many couples, the decision was complicated. In the end we tested for one pregnancy and not for the other. And you know what? I wasn’t happy with either decision.
Both times I felt stressed and angry and upset. I felt the entire process was an affront to my instincts. I felt like a split-personality. Why do I have to deal with questions of terminating when I just got pregnant!? So many people looked shocked when– at age 38– I talked about my pregnancy before I’d had “the test” to make sure it was “all good.”
I was supposed to be happy, but not attached to the pregnancy for 18-20 weeks (when you get the amnio results back) and find out all is “OK.” Fun city. Or I could get a screening which would give me almost perfect results but still a lingering question of doubt. Or I could go for the early CVS test but take on a 1-200 chance of miscarriage. And still there was the question of whether Down syndrome was even a bad thing.
Then I attended a workshop conducted by anthropologist Barbara Katz Rothman, author of The Tentative Pregnancy: How Amniocentesis Changes The Experience of Motherhood. I have read several of Katz-Rothman’s other books, she’s one of the few academics writing about pregnancy and motherhood and I greatly admire her work. I was on the edge of my seat the whole workshop– she talked about a huge range of topics but never got to the dreaded amnio.
But then a woman raised her hand and spoke about how awful and imprisoning prenatal testing is. The way she talked it was clear she assumed a sympathetic audience, of course prenatal testing is horrible! But then Rothman changed the the course of the conversation. She said she’s very uncomfortable when she hears people dismiss prenatal testing altogether. She gave some examples of nuanced family circumstances, where a “right” answer about whether to termite was not at all clear. But then she said something that struck me as completely true. You can’t get away from prenatal testing just by saying no to it. Technology is a part of our pregnancy culture. Whether you use it or not, you still have to have to deal with it. It’s like not finding out the sex of a baby. You can’t just walk away and go back to some “natural” time when we never learned these things. You have to avoid charts, look away from ultrasounds and remind sonogram technicians, doctors, midwives and nurses that you don’t want to know. All this avoiding shapes the experience in a new way.
As I listened to her I started to feel incredibly relieved. I realized I’d been struggling to find a path out of this situation. I realized that I envied people who are motivated by clear and strong religious beliefs. Or who are certain that they would or would not terminate a pregnancy due to Down syndrome. I realized I may never get to a right answer on this.
In the end, I found that testing or no testing, I worried basically the same amount. I worried about whether I’d be a good enough mother. Whether my child would have advantages or disadvantages based on chromosomes, genes and the decisions my husband and I made. I worried about the immense responsibility. And what would happen to my marriage when there was a new person in the house to love and make sacrifices for.
Looking back I think, how appropriate. What was really dawning on me was the hugeness of having a child and not wanting to screw it up. The question of whether to get an amnio happened to be where I focused a lot of this worry. I continue to have absolutely no stance on whether testing is a “good” or “bad” idea. But I do encourage expecting parents to take on this decision in a thoughtful way, understanding the limitations of technology to either liberate or imprison them.
photo: Hamad Saber