Monday, August 2, 2010

Making decisions (need help!!)

I've found something new to worry about! The big decisions (assuming that things are still cooking inside) are all about chromosomal testing.

Option a -- Nuchal translucency (NT) scan in 2 weeks and (assuming all is ok) amnio at 16 weeks. If something looks wonky on NT scan, CVS immediately.
Option b -- CVS test in 2 weeks and then blood test later to test for neural tube defects.

The upside of CVS test -- definitive information now. Which is great. The downside? Risk of miscarriage, which some estimate as high as 1/100, but others as low as 1/1000.
NT scans can get us a lot of good diagnostic information now with no risk, but they are not definitive.

I'm trying to decide which I would feel worse about: going for a CVS now and losing the pregnancy, which would make me hate myself for making such a bad decision; or having to wait until 16 weeks to find out that there was something really wrong and then having to make a termination decision then. Basically, both would be awful, so it's impossible to decide, but I'm quite anxious about making the "right" choice.

This is such a personal decision, and so hard to make, and I don't think either is wrong, but we do have to choose only one and I would love any input that you all, in your collected wisdom, have to share.


  1. Yes, very hard decision. With LG, I did nothing beyond the triple screen (or whatever that is), but I was only 30. This time around, assuming I get there, I'd do NT and only consider doing something else if there's an indication of a problem, as I'm still in the age bracket that the risk of a problem from the procedure (CVS/amnio) is about the same as the risk of a genetic problem found from the procedure.

    But....if you've already decided you're definitely going for either CVS and/or amnio, and know you'd terminate if there was a problem, I'd go for the earlier one, without question. My understanding with the risk is that basically you just want to go to someone who does a ton of CVS procedures, in which case the risk is = to that of amnio. It is a hard choice. Best wishes.

  2. Well, I hate to be the bearer of bad news, but the NT test *can* be definitive. I think it just usually isn't. It was very definitive for us. We chose to terminate without even doing an emergency CVS.

    I don't think I'd change not having the CVS before the NT scan/bloodtest. I was actually really surprised that our RE - who almost never makes definitive recommendations, which drives us nuts - pretty much recommended against the CVS because of the risk of miscarriage.

    It's a hard decision any way you cut it. I do think it would have been harder for us to have had to live with an ambiguous NT scan/bloodtest and then do the amnio and have to make the decision to terminate then (not to mention that the D&C or D&E is riskier then too.) But, on the other hand, I had to terminate at 12w6d and as far as we know everything is a.o.k. (well, physically, at least).

    I hope this isn't too depressing/concerning of a comment for you. If so, feel free to delete. I just was pretty stunned myself given all that they say about how the NT is not diagnostic that what happened to us could have happened. But I also wanted to share what our doc said about the CVS and my own thinking about that.

    Good luck and know that there's nothing you can do to change the outcome of the tests. And there's a really huge chance that all will be perfectly ok with your little bean. Keeping all my fingers and toes crossed for you!

  3. I don't know-- I didn't research it too much, but I did the NT scan because I did want to have the option to terminate... but I didn't want to risk miscarriage by any of the more invasive tests (unless the NT scan came back indicating problems). I think that whatever you choose, things will be OK... but I don't have any helpful suggestions. I guess I'd be wary of the more invasive tests, but that's just me. As you know, no one can advise on this tough decision!!! Good luck with it...

  4. This is such an intimate and personal decision, for sure. It was a tough call for us, especially after the whole IVF rollercoaster and our nervous energy about making sure that everything is okay. When I first met with my OB at 10 weeks, she discussed the NT with us. We pointedly asked her what the distinct advantage was to having the NT at 12 vs. waiting until our quad screen and 20wk ultrasound. She very directly stated that the primary advantage was that this provided an opportunity--should anything be wrong--to terminate the pregnancy. Now, I am about as pro-choice as it gets (sorry, I know that's a hot button topic), but neither of us felt that we could entertain termination after what we'd be through. That's just us, though, and I have nothing but respect for those who choose differently. Anyway, once we realized that this was the only true advantage and that there were other disadvantages (false positives + weeks and months of grinding anxiety, etc.) we opted against it. In asking our OB about the disadvantages of the 12wk NT, she described that with the increased high-definition technology of the sonography equipment used, there are quite often those false positive that occur--seeing a spot on the heart (considered sometimes a soft marker for Down Syndrome) might mean DS, but it simply could be something that's harmless and has always been there, but that this exceptional technology merely magnified an issue that really wasn't an issue. I was already living in a fog of anxiety that ultimately we felt this would be too much for us at such an early juncture. We just had the quad screen on Friday and our 20wk u/s is in the next 2 weeks. We'll see how things wash out for us from there... (I don't know much about the CVS though.)

    Anyway, just wanted to concur and offer that yes indeedy this is a difficult decision. Listen to your heart. :)

  5. Delurking. The only tests we did for both pregnancies, one at 38 and one at 41, was the amnio. While the CVS is definitive - it isn't definitive for everything. The amnio gave us a 99% reliability rate on any chromosomal abnormality. A high risk OB does the procedure multiple times a week. I had zero complications either time and if I had to do it all over again I would.

  6. I'm not sure how it is with you, but here in England the NT scan is done alongside a whole gamut of blood tests. While we were told that the NT wasn't necessarily diagnostic on its own, combined with the blood tests, the results would be a marker for whether or not to go ahead with an amnio.

    To NT or not NT is a personal decision, and a tough one. We are glad we did with Bean, but that's just us!

    Good luck.

  7. I think the main difference between the 1/100 & 1/1000 statistics is the skill level of your doctor. I'd say, find out your doctor's rate of miscarriage per procedure to find out what the real risk is for you. I found CVS results to be incredibly reassuring, and was glad I did the procedure when I did, rather than waiting for amnio. results.

    This is such a hard decision, though, and reliant on such personal and individual things. Think it through & don't be afraid to ask your doctor any questions you might have. Thinking of you.

  8. Tough choice, indeed. Remember, there is risk with amnio too, so it is not like CVS is the only test that comes with risk. I think amnio is more exact, which might be more comforting in the long run. And you might as well do the NT, it is painless, and another chance to see the baby on u/s. I'l always take an extra u/s!

  9. A difficult decision. I have had the NT with great results at 37 years old and then lost the baby at 16 weeks due to Trisnomy 21. It was missed on the NT, told my risk was that of a 20 year old. So now I am pregnant again, 13 weeks and just had the CVS last week here in NYC. Went great, I think the expierence of the doctor is what matters. Had it at Cornell and got the results in 24 hours, all is good. Based on what happened to me, I would do CVS, the earlier you know the better. Plus I have no faith in the NT, I was the one in 5.480 that was missed last time. If you want to speak directly, email me directly at I could give you the name of the guy that did it, he was great and came highly recommened. Good luck! Chances are that all is good, but I know it is extrmely stressful.