So, one of the confusions right now has to do with the amniocentesis. After my last post, one friend wrote in:
"On the practical, also-an-older-Mom-who's-been-there side, unsolicited advice: You don't necessarily need an amnio to check for Downs. You might look into something that here was called an "integrated screen." I had an ultrasound at 11 weeks, with a blood test, followed by another ultrasound at something like 18 weeks (can't remember for sure). Together, their accuracy was even better than amnio with ultrasound, without the risk of amnio."And then another friend wrote in this story:
"S and I went in for all the ultrasound (done at 8-10 weeks for abnormality screening purposes) and genetic testing (anytime), and chromosomal abnormality screening tests (blood tests at 10 weeks, if I remember correctly). These were insurance covered because by the time M was born I would be 35, so the pregnancy was classified as "high-risk," by a matter of 4 months. So my OB referred me for genetic and fetal screening. None of these showed any irregularity (they are not diagnostic of things like Downs, but they indicate to about an 80% accuracy rate and taken together provide much better odds). Still, we were told that at 35, amnio was the "standard of care." We were at a large teaching hospital with facilities which specialize in genetic screening and amnio, so I was as comfortable as I could be at with getting the amnio, and we, like you, felt we would terminate in case of Downs.So even though Kev and I had talked it over and decided we'd do the amnio, now I'm really not sure again. I think I'm going to print out this page and take it with me when we go to talk to doctor on Tuesday. Confusing!
"We had a complete ultrasound before the amnio. In came the doctor to do the amnio. She had reviewed our entire file of tests and the ultrasound we had just had. I was trying to get psyched for the very large needle...She said, look, considering all of your screening tests and genetic tests, plus the two ultrasounds, the chances of a really serious abnormality are 1 in 13,000 (I think that's the number she gave). The chances of amnio causing miscarriage are between 1 in 200 and 1 in 300 (it varies from place to place). Amnio at 35 is the standard of care because in people who have not done pre-testing, the odds at 35 are equivalent (1 in 200 Downs vs. 1 in 200 miscarriages due to amnio). "But," she went on, "the odds for you are different. I'd like you to think about it seriously." We asked for a little time. "Sure, I'll be back in 10 minutes." Gulp.
"We didn't have the amnio. So, if I have one piece of advice, it's to get those screening tests while you still can. They aren't certain, but they are risk free and reassuring. You can still choose to do amnio after them. If you need the names of the tests I had, I can find out for you."
But at the same time, I just have to say it is so *immensely* helpful having people to talk to who have been through this, who can give concrete advice out of their own experiences. We've bought books and are reading them; we do research on the internet. But there's a different weight to people's personal experience, and it's a lot easier to believe individual reassurances than general ones. So, thank you all, so much.
On the subject of books, just a few quick notes:
- What to Expect When You're Expecting -- not bad, but kind
of a scary book, with a lot of emphasis throughout on all the various
things that can go wrong. I probably won't keep reading it.
- The Mayo Clinic Guide -- excellent! Has much of the
same information as the previous book, but it's both more authoritative
and less scary. We love the huge index in the back, where you can look up
things like "Fatigue," or "Hypothyroidism," or "Fears, Irrational."
- The Expectant Father -- generally charming, although more
new-age-y than Kev expected. We're enjoying reading it, though, so