We still have a letter in James's file from our July 2006 visit to the genetic counselor when Julie was pregnant with him. We had had a minor blip on a 20-week ultrasound, then a second minor blip on the follow-up perinatal ultrasound. But after some more blood work and a meeting, we got our 2 1/2 page letter, which said in the Summary and Results section at the end:
"Your quad screen gave you a risk of 1 in 2,614 that your baby would have Down syndrome."
I remember e-mailing a colleague of mine around that time about a book I was reading, a Philip Roth novel called "American Pastoral," a gut punch of a book about the American dream going horribly wrong for a man and his family in post-World War II New Jersey. I remember telling her that, reading the book and worrying about the ultrasounds and test results, I was hoping hard that we wouldn't be the "1" in the odds—that even though I usually wanted my kids to stand out, to be exceptional, that this time I was hoping to be just like the other 2,613 cases where everything was "normal."
That's how I was thinking before James. This time around, we knew going in that the risk for another child with Down syndrome was 1 in 100.
We had a perinatal ultrasound in early August, standard this time around because of Julie's age and James, and met with another genetic counselor. I remember asking her how many families she had seen with two children with Down syndrome in her career—she said one, in 17 years.
A few weeks later, the word came back that our odds were 1 in 1,300. We first heard that in a phone call from the counselor we had met with—she was very excited to deliver the good news, since from her perspective the odds had decreased by a huge number. Of course, from our perspective, that meant that they were double what they had been in July 2007 with James—which we noted with wry laughter.
Another test on the blood, though, kicked out another number, this one dated September 2: 1 in 3,500. Still, if we learned anything last time, we learned that the numbers don't really matter, and that none of us would know what we were talking about until the baby arrived and let us know itself.
By the time our 20-week ultrasound rolled around on October 1, I wasn't thinking about odds very much any more, but I knew that 20 weeks was where our worries started last time, and that I'd be hoping we wouldn't see another little thing like the thing we had seen then. My friend Tim asked me at work the day before the ultrasound if we were nervous, and I said that we hadn't been (or I hadn't been, anyway), but that I thought I'd start sweating it pretty good when we actually got into the waiting room.
A funny thing happened at the ultrasound, though. I found that, even while I was holding my breath to see if they'd find chorid plexus cysts, or an echogenic foci, I was having another series of thoughts: what was I wishing for? A healthy baby, of course, just like with the other three. But I also knew that I was wishing again not to be the "1," though I wasn't saying that directly. I was wishing that the baby wouldn't be James. When the genetic counselor was calling with her happy news, she figured it was happy news because the baby wouldn't be James.
I'm certainly not saying that I, or the genetic counselor, was doing something wrong or insensitive. I think we were both—parent and scientist—having pretty normal, understandable thoughts. But I started to realize that I had never really questioned the implications of those "normal" thoughts before.
I have been thinking that we don't really know how to deal with the idea of the "1" when it's still an abstraction. And in the abstract, it seems like it would be better if things went one way rather than another. It certainly seems like it would be easier some days when James is pulling hair or has just thrown his bowl of pasta across the room, or when we start to worry about his life too far into the future.
But of course it doesn't really matter what we want—we're going to get what we get and not throw a fit, as the kids like to say. And when I was sitting in the ultrasound room and looking at the little person on the screen, it wasn't a "1 in x"—it was just a one, whoever he or she is going to be, just like James, and Luke, and Megan. I felt kind of bad for hoping that this one is some other bigger, safer number. Well, that's not quite right—I felt like I didn't need to worry so much, that I could let it go, that there is a new normal I'm learning, and will probably always be learning—and James is the one I have to thank for that.
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4 comments:
We hope that someday James can read this blog, or you can print it off for him, and he can gain some understanding of just how lucky he is to have been sent to two such wonderful parents. Somehow, we think he already knows this........
Beautiful reflection, Steve.
Steve, I found myself thinking not just about birth but also about death as I read this entry. Throughout my life, I have registered every combination of birth-date & death-date as a message about my own odds and the odds of those I love (though I must admit that sometimes I don't know whether to figure a late-in-life death as good for me or bad for me: I mean, the news that someone has lived to ninety makes me think I could, but rather than shifting my overall odds, it also counts as one of those few ninety slots in the pool. It might be my ninety that Carl Sandburg or whoever got.
In any case, your rumination on odds reminds me of the foolishness of this. For each individual, his or her life or death is, as Tim says, "what it is." Each man may, as John Donne says, be part of the main. But I'm me and nothing but my own healthful and unhealthful choices (Barbara's Tootsie Rolls, included) plus chance and/or grace will determine my number; and it's a combination of folly and vanity to think otherwise. I remember another angle on this from Dickens's Hard Times. As I remember it, I think it's Gradgrind who re-assures Cissy Jupe that her degree of poverty is a longshot by national averages and therefore she needn't regard it seriously. As George Carlin would say, "Thank God for that."
i really like this post, you are so lucky to have James
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