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[quote=Anonymous]LJ,

Weren't you very unsure about your exact dates? I am sure you've googled the hell out of quad screen accuracy and have already seen that any confusing over baby's age will give you a false positive. I wanted to get that in there right off the bat, just in case you hadn't seen it. Please google if you haven't, in this case Dr. Google will reassure you: you'll see both official pages warning that this is a factor in false positives, and literally hundreds of moms on various message boards recounting stories of how a slight miscalculation of gestational age (as small as 2 days!) threw them into 1:3 risk category, etc, and all was fine.

(This is Pumpkin BTW). So you may remember or not, but I'm 40. I am sharing this not because one person's stats are going to make another person's stats any different, or make you feel better, but in case it gives you some perspective: my age-based risks (1 in 100) are much higher than your test-based risks. (Although I get why screening stats could be scarier, since they are supposedly based on something).

We chose not to test for a number of reasons, I outlined some of them before on this thread, recognizing that it is a hugely personal issue. The chief reasons I declined the test is that, like you, I don't want to abort a fetus with Down Syndrome, and I wasn't willing to do an amnio, with its low but existing risk, just to resolve ambiguous results. My age means I'm even more likely to get a "false" positive. I am not a person who handles ambiguity well, so I didn't want to sit through the rest of my pregnancy over an increased percentage point (or two dozen...).  I know this won't make much sense to everyone, because 1:100 is not exactly a super reassuring number - I mean, someone wins the lottery - but the truth is, it's a small number. If we think about it in the reverse, that we have a 99 percent chance of NOT having a healthy baby, a great number of us would probably decide not to roll the dice. And I guess I didn't want to go into it hoping to get a "better" risk stat than my age, but end up with a worse one, and think it must mean something since, as I mentioned, it's based on "something."

But of course, you have to remind yourself of the huge false positive rate and that this is a screening to begin with. The quad screen, in particular, is a troubling test to me. Not just because 5 percent, on its face, is a high number of abnormalities, but by how confusing and, well, I think at least, misleading that "5 percent" false positive number is. My doctor with DS broke it down for me like this, and I may not be remembering correctly. But a "positive" is not a positive, it's elevated. So that means there is a 5 percent chance that you are not, in fact, at ELEVATED risk of a fetus with DS. But there's still further margin of error. Because what does elevated even mean? Well, what that means is that you have a 1 in 150 chance that you MAY have a child with T21, but there's a five percent chance that even that is off. I remember my first OB telling me that in all of his years practicing, something like 99 percent of the false positives resolve in completely healthy babies, and thinking, how is that not more like [i]1 percent accurate[/i] as opposed to [i]95 percent accurate[/i]? But I guess it's all about the "elevated risk" rather than the positive...who knows....there is a reason I am not a statistician by trade!

This time around, declining tests was a no-brainer, even though my risks were higher, because I'd already done the research the last time, and I also knew how I reacted when my 20 week scan showed something ambiguous about my uterus (uterine "shelf" that thankfully resolved completely) and how much relentless anxiety that caused for me.

Only personal rant I'll allow in here is that I think doctors should be REQUIRED to make sure an expecting couple completely understands the accuracy of these tests and has considered the tools available for resolution (or lack thereof, if unwilling to do amnio) and is okay with the uncertainty. Too many women are led to believe the tests are plus / minus, or easily clarified. Until you're the one who gets that scary (and nearly certainly false) positive.

This is a touchy subject and I have personal feelings about it - I will feel just terrible if I've said the wrong thing, or offended you or someone else in sharing this. I promise I'm only trying to make you feel better, but please do forgive if I've missed the mark! You are in my prayers.

One last thing. With my last pregnancy, when my 20 week scan showed this shelf thing, I googled it and scared myself sleepless. I let myself handle the fear by giving myself permission to actually visualize life in the worst-case scenario, for a given period of time. I actually thought about it metroing to work in the morning. The risks of the shelf thing is that baby might have deformities due to lack of room to grow or the uterus forming tentacles, etc. So I let myself imagine a baby with major deformities, let myself imagine the looks at Target, etc. (I've posted this story before if you recognize it). And then I just made myself stop, and think about something else. It made me do two things: 1. limited the time to obsess about it and 2. let me explore the idea in my head and get a comfort level with what life might be like if the rare instance that I had "won the lottery" had happened.

I hope something in this helps.

xo Pumpkin [/quote]

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