rant of the day

I just stumbled across George Will’s column in Newsweek. Never heard of the guy, but I read it thanks to the topic, which is prenatal screening and Down Syndrome. I suspect I wouldn’t much like Will, based on his line: “this era of the casual destruction of pre-born babies.” As someone who is strongly pro-choice, the term ‘pre-born’ raises flags. And yet, I can understand his distress over the abortion of children with Down Syndrome, or Trisomy 21.

I was 35 when I became prengnat with Boo, which automatically put me in the category of recommended screening. Everyone just assumed that, as I’d hit that magical number, I’d have an amnio to check for genetic abnormalities, Down Sydrome being the main one. But with Maya and Asher, I’d had pre-term contractions. They never actually turned into pre-term labour, thankfully, but my doctor and subsequently midwife, told me I had an ‘irritable uterus’. (Made sense really – the rest of me was damn irritable during pregnancy, why not my uterus as well?)

What no one could tell me was if my irritable uterus was more likely to eject it’s contents if someone stuck a needle in there. As it is, amnios carry a small but not insignificant risk of miscarriage, which completely freaked me out. Boo was a surprise, but once she was on her way, I was desperate to keep her (I was completely, irriationally convinced she was a girl).

Prenatal screening is a stressful game. There are blood tests that can tell you your odds of a problem, but nothing absolute. And, to make it more fun for the already hormonal mom-to-be, the blood tests are often wrong. So you get the blood test, it indicates a possible problem and you have the choice of living with that extra stress until the child arrives, or going on to an amnio. The only absolute tests involve needles and an increased risk of miscarriage. Most people with a false positive (of problems), as far as I can tell, go on to an amnio that tells them everything is fine. All that stress for nothing, really. Some end up with the news of a problem and some end up miscarrying a perfectly healthy baby.

I was terrified of the tests. I’d done nothing in my previous pregnancies, electing for the head-in-sand approach to the whole issue, but suddenly, having reached the magic 35, it was assumed that I’d have the tests. If the blood test came back with a bad result, it was assumed I’d have an amnio. If that came back with a bad result, then what? Was it assumed I’d have an abortion?

I felt my babies really, really early. By about 14 weeks, I had little low flutters. I remember Boo’s clearly, as she liked to hang out in the lower right of my belly. I remember lying on my bed, feeling those tiny tickles and realizing that the part I didn’t get in this whole equation is that Down Syndrome is supposed to be worse than miscarriage. I realized that I didn’t care if the baby had DS. I could feel her. She was there, and that was where I wanted her to stay, no matter what.

I did some research into Down’s and a lot of research into what my odds really were, at my advanced age (which really wasn’t, statistically-speaking, that advanced after all). I decided that if I balanced all those odds out, it really wasn’t worth the risk. J agreed, thankfully, and we did no tests. That decision lifted a huge weight off my shoulders. I was convinced the baby was fine, even if she did have DS.

When Boo turned 2.5 and moved up to the preschool room at her marvellous daycare, which she attended twice a week, she soon began to talk about her friend Olivia. She loved Olivia. I heard lots about the two from the caregivers too, how close they were and how they fell over with exuberance when they hugged each other. It took me ages to actually meet this new friend, but finally one day, as I walked in to pick up Boo, I was greeted by a lovely little girl with jet black hair, bright red lips and snowy white skin. I swear, the first thing I thought when I saw this child was: it’s Snow White! The second thing I noticed was that she had DS. This was Boo’s best friend.

I feel as though Olivia is some sort of confirmation of the choice I made then, that even though Boo is completely healthy Olivia is proof that I made the right choice. I know that is crazy, but there it is.

I am too pro-choice to suggest those pre-natal tests aimed at detection genetic problems be disallowed, as some people are apparently suggesting. I also think that every woman, every family, has a right to decide for themselves what their family will look like, as much as they can. Only they know what they can cope with.

But I can also completely understand why people like Will and others who are related to people with DS are angry at the prenatal testing aimed right at detecting the syndrome, because it seems to come with the assumption that a diagnosis of DS means terminating the pregnancy.

I think the answer lies in education. Much of the time, it seems that prenatal screening is just presented to pregnant women as a given, without much discussion about what real information the results will provide and what her options are after that. The results come with assumptions too, and that also is not fair. It is only truly a choice when women know exactly what they are chosing.

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