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Medical correctness
Submitted by stefan on Fri, 25/01/2008 - 3:36pm.
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Kevin of illeatyouup.com recently posted a good article summarising his thoughts on their doctor's suggestion to go for an amniocentesis. It resonated with me as we had a similar case in our circle of friends where doctors AND midwives talked about the unborn baby as if it was almost certain that it would have down syndrome (because the mum was 40 and neucal fold came back with a risk of 1 in 24). Sometimes I wonder if doctors and midwives are aware of this? Perhaps it is more showing their preferences than anything else.

Anyway here is Kevin's original post which I'm re-blogging here with his permission.

-Stef

Doctor Negligence? (http://illeatyouup.com/)

This is something that has been on my mind ever since our last ultrasound on January 8th. I wanted to write about it in hopes that I could compose my thoughts and also get insight from others who may have had similar experiences.

My sister, who was concerned about our experience with our last ultrasound, had a discussion with a friend of hers who has been an emt/nurse for little over 20 years. The insight she gave my sister made me reconsider the situation the doctor we visited had given us. I mentioned before that I take everything with a grain of salt, and I still do, and I understand that since nor my sister or her friend were there, they won’t be able to interpret the situation to it’s full extent. But that doesn’t mean considering their insight is something I’m going to disregard.

The one thing that I keep asking myself is, “Was it right for the doctor to recommend an amniocentesis with such a low percentage indicator?” I’m not sure if he was just having a bad day or what, but he made us feel like we had a high risk pregnancy. With a 3-4% chance of down syndrome, and no other indicators, would anyone really do an amniocentesis? Especially when the risk of that test doing more damage than good is, give or take, the same percentage of having down syndrome in the first place? I just don’t see the need for a test that only gives us a yes or no, with false positives, with a risk of causing a miscarriage, just to know, when the only indicator makes it such a low possibility. The doctor didn’t seem to understand how I felt about this, and I’m not sure why.

He also seemed to mention abortion quite a few times, even when I thought I made it clear that abortion was not an option for us. Which also makes me wonder if he thought we were just some stupid young couple who shouldn’t be having a child. Either way, I don’t think he understood the effect his words had on us. If you remember the last entry about this, I had said that Adrienne didn’t even make it out of the elevator before she was in tears. I know this is our first child, but something tells me that’s not what’s supposed to happen after seeing your child move around on an ultrasound screen, so you can imagine how the doctor made us feel by what he said.

Maybe if he approached us a little different, explained himself more, and used a much happier tone, the whole experience could have been different. But since it happened the way it did, we decided we weren’t going to be seeing that doctor anymore, and I don’t think anyone would blame me for saying that.

This also makes me wonder how many oblivious and naive parents out there have experiences like this only to end up having an abortion when it wasn’t even necessary? Not that abortion and necessary should even be in the same sentence, but that’s a whole other debate in itself, and one that I don’t want to get into.

I’d like to hear some insight on what others think about the situation. And although none of you were there, and it’s near impossible for me to explain what he said and how I felt at the moment, I still want to hear what others have to say.

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If you're not prepared to

If you're not prepared to abort, then there's really no reason to have an amnio - full stop. I think the information is only worthwhile if you're planning on acting on it. Having said that, raising a child with a severe disability like Downs Syndrome can be an endless heartbreak resulting in death and more heartbreak... which is why even though 1 in 24 may seem like low odds, the consequences of coming out on the wrong side of the odds can be devastating for the whole family. People would be pretty worried if there were a 1 in 24 chance of an asteroid hitting the earth, and Downs Syndrome would have a similar effect on a family.

That said, given our personal experience with an amnio gone wrong, I'd recommend against it if you're in any doubt. My wife had an amnio on the Doctor's recommendation (mainly on the basis of her being age 43 at the time)... they took the amnio, but the puncture never sealed. My wife lost all of her amniotic fluid, and was perscribed bed rest for five weeks while the fluid (hopefully) built up again. There was only a 50-50 chance that the fluid would build up again ... and thankfully it did. The baby (now a 4yo) seems to be a wonderful kid in every way. But who knows how things might have turned out differently?

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