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September 05, 2005

Pregnancy wackiness

I don't know why I didn't write down what I was feeling while in the throes of this. It's been a rotten 4 weeks.

Last pregnancy (with Ethan), I took the routine "quad screen" test, which measures AFP, hCG, estriol?, and inhibin-A, if I recall correctly. The idea is that they then take the levels of all these chemicals, your age, and how far along you are, compare that to the average of normal pregnancies and pregnancies with various problems (chiefly spina bifida and chromosomal abnormalities), and come up with a risk of these various things. So, with Ethan, I had a high risk of Down's syndrome (1 in 126, whereas based on my age alone it should have been 1 in 400 or so). We did a follow-up ultrasound which was almost normal, so I was reassured. Jeff wasn't worried at all, and we knew we wouldn't terminate the pregnancy, so we decided not to get an amniocentesis and just made it through the pregnancy. And in the end I was a "false positive," since Ethan didn't have Down's.

But now it's my second pregnancy, and I know what I'm doing. I figured I was pretty well equipped - both to refuse some of the tests that I failed last time (I also failed the glucose screen), and also just to worry less, since worrying was no fun last time and everything was fine. But this time around I'm 35, which is of course quite a bit older than 31 - they call it "advanced maternal age."

So Dr. Ribbink told me that these days they're doing the nuchal translucency test instead. It measures 2 chemicals (hCG and PAPP-A, you'll be excited to know), and also the fold at the back of the neck of the baby, which was one of the things they measured in Ethan's ultrasound too. It tends to be bigger in babies with Down syndrome. Anyway, they do it earlier (10-14 weeks), it's supposed to be more accurate, with a lower false positive rate. I knew I didn't want to do the amnio, so this seemed like a good option.

Seem ominous yet? We went in to do the test, and got to see our very small lima bean on the ultrasound. The neck measurement was on the high end of normal, but they found fluid around the heart and a few other places, which the doctor said he thought meant "about a 60% chance there's SOMETHING going on with the baby." He couldn't say what, but scheduled a follow-up.

A few days later we got the results of that plus the blood test, and I was shocked to hear my odds of Down's: 1 in 9. My hCG was a little high, and my PAPP-A was really low. PAPP-A is one of the strongest single indicators of Down's, so I guess that's what made it 1 in 9. Plus my advanced age, no doubt.

Anyway, over the next few weeks I did lots of research in an attempt to convince myself things were actually OK: my favorite theory was that since low papp-a is also associated with low birth weight, and so is low iron, maybe my perpetually low iron CAUSED the low papp-a. Or maybe because I was only 10 weeks and 6 days, but they use a measurement of the baby to decide the gestational age, they were using the wrong dates. Or maybe because I'm still nursing, my hormones made the chemical levels off. My most plausible theory was simply that since my chemical levels were strange last time, maybe I just have weird levels of things and always will.

That got me through the three weeks we had to wait. But then at the follow-up ultrasound (which involved much more fun kicking and rolling and hand-waving), they found that the nuchal fold was now in the abnormal range, the arm and leg bones were short, and there were multiple choroid plexus cysts on both sides. I was sort of stunned, but took that as pretty definitive news, since that would raise the risk even higher than 1 in 9, which was already darned high. I was depressed, mentally explored and then discarded the idea of termination, and then started preparing. I should mention that although Jeff was worried too, he also had a good line about having a baby with Down syndrome: that all kinds of people make up the human race, and who are we to say that a Down syndrome baby wouldn't bring something wonderful to the world and to our family? When we were worried about it with Ethan, his basic attitude was that our job is just to love our baby, which isn't hard.

So I ordered and read three very good books on Down syndrome. It was helpful and I learned a lot, the most important thing being that in the past decades great strides have been made in terms of helping people with Down syndrome achieve a lot and live pretty close to normal lives.

All right... I meant to finish this story, but I think that's enough for one entry. The thrilling conclusion is coming soon.

Posted by ktingey at 03:55 AM | Comments (3)