September 17th, 2012

planet

genetic testing

I seem to still be pregnant... not quite to seven weeks. Pregnancy is still annoying in this stage, so nerve-wracking, and you feel so alone, but it's nothing like the first time. I know a lot more. I'm not facing the demise of my independent childless life. I'm more accepting of things I can't control... yes, I might miscarry, but it's not something I have anything to do with. I am not giving up coffee this time around. I am not giving up face soap with salicylic acid. I am not giving up Arby's... yeah, it's deli meat but it's HOT, dammit.

What is waying on my mind? Genetic testing. They asked me about it at my first doctor's appointment last time and I was like "WHAT'S THAT?" and turned it all down.

Was that a good move, or just a gut reaction? How would I really feel about having a baby with down syndrome, or worse?

Here's what happens: they do an ultrasound at about 11 weeks and try to see how translucent your fetus' neck skin is. If the fetus will have a genetic problem, there's a 25% chance they'll miss it. If the fetus is normal, there's a 10% chance they'll tell you there's a problem. Pretty bad rates, so they do another test if there's a problem where they shove a giant needle into your belly around 16 weeks and tell you a slightly more accurate diagnosis, at which point you... I don't know. Decide whether to terminate a pregnancy that's four months along?

I posted about this in a birth club and everyone said "Well yeah I'm getting the test, it's a free ultrasound, you get to see your baaaa-beeeee!" Dammit. I know exactly what's going to happen, I saw it last time in pregnant... a bunch of those tests will come back as "your baby has a 1 in 20 chance of DS, not 1 in 1000 like we normally think" and the freakout posts begin. None of these women have any idea what to do with the results of the test if they don't like them!

So that's what I'm asking myself... what would I do?

I don't know if I could live with the guilt of terminating a pregnancy because the baby might have genetic issues. My family would practically disown me, after sending my that poem about the family that goes to holland, you know what I mean. Sometimes, the symptoms end up being mild. The test doesn't tell you if your baby will be high-functioning down syndrome, just that something won't be normal. What do you do with that information? You hear stories all the time from people who were told their babies wouldn't be normal, but they are. There was even one in the community from a mom whose daughter has spina bifida... and is walking around just fine.

But if you google around you hear other stories too... newborns that don't live a week, kids who have to be strapped down to keep from injuring themselves, afflicted with horrible behavior disorders. What would I do? Would I be strong, blog about it so everyone could tell me how brave I am, organize bake sales for medical research, be on those posters? Pour my life savings into getting my child the best in care, for my entire life?

Right now, at my age, the risk is around 1 in 300. It isn't much. When these tests first came out, they weren't even offered to women under 35... I guess we wanted them. Maybe for that insurance-paid-for ultrasound.

Am I being stupid, flippant, naive to refuse genetic testing? I'm trying to picture a mother of a disabled child, standing there in the doctor's office with me while I say "Psh, I'm having this baby, whatever it is, bring it on!" I also don't want to get the test and just assume everything will be peachy, like most women seem to do. I am caught in the middle and really struggling.