Pregnancy Screening: Do it, or Don’t?

Image from WikipediaI wrote some of this as a comment on yesterday’s post but realized it deserved a separate post. Even if you read the comment, please skim this. Or at least read the last few paragraphs, which are new and rather startling.

I declined screening when I was pregnant with Girly Girl (who has Down Syndrome). My OB (an imminently sensible man) said there wasn’t much point in screening if you wouldn’t consider termination. He also knew the screening isn’t 100 percent accurate. Amniocentesis IS, but that comes with a miscarriage risk. And since I’m a walking miscarriage risk all by myself, I probably was not a good candidate for amnio, he said.

After Girly Girl was born, though, I wished I *had* done the testing. I spent six months on bedrest with that pregnancy, bored out of my mind. Then she was born, and I spent the next six months frantically trying to learn everything I could about Down Syndrome — in my “spare time” — between feeding her every three hours (one hour), pumping breast milk every three hours (another hour), sitting by her hospital bedside praying she’d survive another day, taking her on the never-ending cycle of therapists and specialists, doing all sorts of exercises with her to support the therapy, etc. etc. etc. I really begrudged those lost hours I spent watching day-time TV when I could have been learning about DS.

When I got pregnant with Mad Scientist, we again skipped the screening — and went straight to amnio. I wanted to know. We wouldn’t have terminated the pregnancy (are you kidding? We were praying this one would stick!). But if he’d been positive, we would have done a Level II ultrasound before even considering another homebirth. Babies with DS are so often born with life-threatening conditions, that in the hospital, they are often birthed with a team of doctors: an OB, a neonatal pediatrician, a cardiologist, a gastroenterologist, etc.

Our odds of Mad Scientist also having DS, given my even further advanced age and our previous child with trisomy-21, were one in four. Yes. One in four. And if he had DS, I wanted to give him the best chance possible of surviving his birth.

As I said, amnio comes with an increased risk of miscarriage — something *I* can do quite well on my own, thank you very much. But the risk varies dramatically from doctor to doctor (by an order of magnitude). We looked for a doctor with VERY high results (she’d never had a patient miscarry, despite hundreds of amnios, and had only one patient suffer spotting).

We moved when I was six months along with Mad Scientist and found a wonderful, very professional midwife in Washington to attend our homebirth. When we told her our story, she said we could have done a Level II ultrasound instead of an amnio to get the same results. In fact, she routinely recommends them for older mothers. Though they do not show, conclusively, whether a child has DS, they do show the congenital heart and digestive problems that can threaten a newborn’s life.

By then it didn’t matter: his chromosomes were normal. Two of each, just like mine. So we went ahead with our planned homebirth. And it went fine. Well: if you count me having to saw my pelvis in two and pop my eyeballs to push him out as “fine.” OK, OK, maybe I exaggerate the tiniest little bit, but it really did feel that way!

If I’d had another baby? I probably would have done the screening, or even the amnio again. Personally, I want to know. It gives me a chance to prepare myself emotionally rather than being body-slammed with it at a time when I’m already sleep-deprived and recovering from labor and delivery. But that’s a personal choice each woman should make on her own.

Which is exactly my point. As it currently exists, the screening doesn’t help would-be parents prepare for the birth of their non-typical baby. As Kathy pointed out, first trimester screening has no medical purpose at all. It only serves to make abortion easier. It’s an attempt to rid the world of people like my daughter. And as such, I have to be opposed to it. She’s a wonderful addition to the world!

Nor is the screening 100 percent accurate. According to this site, thirty percent of the babies with DS will have a “negative” result on the Triple Screen test (20 percent on the Quad). A “positive” result, however, doesn’t mean your baby has DS. It means the odds that she has it are “increased.” “Increased” risks might give a baby odds of 1 in 380. You can get more information by doing a high level ultrasound, but the only way to find out for certain is to do an amnio. And the average* risk of miscarriage after amnio is 1:200.

So … if you can follow my logic … women routinely take a 1:200 chance of losing their baby to miscarriage based on a 1:380 risk that the baby has Down Syndrome. YIKES!

Too much math though. Ugh. Let me put it another way. I clicked over to the petition to see how many signatures they had so far. You have the option to add a little comment, including information about your child with DS.

I happened to see signature #2055.

As a pediatrician, I know first hand how outdated and inaccurate medical information concerning Down syndrome is. I also realize how inadequate prenatal testing can be. Women need to be fully aware - not only of the high rates of false negatives and false positives, but they need to be fully informed if their unborn child does have an abnormality. Part of this information needs to come first hand from families who have children with the same diagnosis. They also need to be given UP TO DATE information concerning the diagnosis.

Negative quad screen; negative level II ultrasound Madison, Trisomy 21, 7/07

In case you didn’t understand, that was written by a pediatrician, who had a Quad Screen (considered more “accurate” than the more common Triple Screen) and a Level II ultrasound. Both came up negative.

Her daughter was born in July 2007 with Trisomy 21: Down Syndrome.

Again, if this issue matters to you, please consider signing the petition. There’s more information in yesterday’s post.

*Remember what I said earlier about the wide variance in rates among different doctors. The average risk is meaningless if you’re considering amnio. You need to ask for your specific doctor’s miscarriage rate.