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DavezWife
member
Round Table: NT Scans/CVS/Testing
DavezWife
member
Care to share your views on doing advanced testing around 12 weeks to test for abnormalities? (NT scans, bloodwork, CVS/amnio, etc)
My mind used to think one thing, and now that we just lost a baby that had major abnormalities (says the trisomy 13 diagnoses in general) my mind does not know what to think. What will we do next time? How has this changed how we thought? What if the pregnancy continued, we skipped the testing as we had planned, and then delt with whatever hand we got?
A lot of what-ifs, but it's very strange to have one idea in your head, and when actually faced with it, how to cope with the feelings that come with it.
All thoughts welcome, play nice ;-)
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Re: Round Table: NT Scans/CVS/Testing
My RE isn't a fan of CVS as it's riskier than amnio. ?
I'm a HUGE fan of NT testing and then follow up amnio if warranted.
Regardless of wether someone thinks they'd terminate or not I'm a "need to do research and be prepared" kinda gal.
I would want as much heads up as possible to learn about any problems, find specialists, and make sure we had all hands on deck and ready to go at birth.
I can not imagine going into the delivery room expecting a healthy child and finding out after giving birth that we had a child that needed extra help and I was flat footed trying to find it.
Granted - the "big u/s" will usually uncover these issues but still..... ?for me the more time to plan the better.?
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Total score: 6 pregnancies, 5 losses, 2 amazing blessings that I'm thankful for every single day.
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totally agree on all of this
and since we did have a soft marker pop up in our big u/s..it was good for the doc to be able to have our NT scan to compare the ratio numbers to to determine what the next step would be (for us, f/u u/s)..we were right on the border of where they recommend further testing so we did the AFP, and i guess that came back normal..because they never called. He said at this point he did not recommend the amnio, unless we were considering termination, which we aren't...so he said after the next u/s, if things have not cleared up the way they expect them, the he would recommend the amnio, for knowledge/preparation sake...
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Joey, Ronnie, and Audrey,
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While we were never in the situation where discovered there was an issue, we had decided completely against the NT scan about 2 minutes before our RE highly recommended it because Baby B's neck measured "borderline" abnormal.
So we had that and the bloodwork done. I would not have gone any farther with testing though because I feel many things are too risky. Of course, I say that now because everything measured in the normal range.
I do think if I were to lose a baby due to a major abnormality that could happen again, my views would be changed drastically and I'd be much more willing to have all testing done that was available.
I asked my OB about these, and he told me in his opinion, many women who do not present risk factors for possible defects are being tested, and he feels it is a money thing. If insurance will pay for it, some Dr.s will just do it. They make money, woman gets peace of mind. He told me he would rather give me an US at every apt that to put me through unnecessary tests if that is what I need to remain calm and happy.
Again, if I had a history, or risk factors, I would probably be singing a different song. I would not, and have not had any of these tests with the exception of a lung maturity amnio with DS to make sure he could be born, as I needed to deliver.
We declined all of that, but I'm not sure what I might have done had we had a reason to believe something could be wrong. For us, we are fairly young (mid -late 20's) and have no family history of anything like that, which I think were big reasons we weren't all that worried.
We also felt that IF something were to come up as abonormal or cause for concern we would not have aborted nor would we have gone on to do an amnio (too risky for me) to check for more certainty. IF we would have gone on to do the amnio I could see doing it to see, but since we would nto have I felt like it was kind of pointless.
At the time I was seeing an Ob and she explained to us the really high risk of false results and then everything is fine or not, regardless of the results you get. Since there was no checking to "be sure", that didn't really sit well with me.
The only reason I thought about the NT scan for a moment was another look at our baby, but I realized that wasn't a good enough reason (for me) to go through that worry just for that. We were also told that they could see anything major at our anatomy scan at 18 weeks anyway.
As I have gotten further along in this pregnancy I have also moved more away from optional testings and the feeling of treating pregnancy and birth as a disease as many seem to view it. I just don't feel the need for all of that (in our case), but could understand if there is a reason to believe something might be wrong. In that case, all this technology and early testings are wonderful, but for a pregnancy that is going well with no other issues surrounding it, I am not a big fan of a ton of testing and medical intervention.
After getting pg last summer, my dh and i found out that we were both carriers of cystic fibrosis and that our baby had a 1 in 4 chance of having this awful disease. We had no plans to terminate, but wanted to know either way so we could stop worrying or start preparing for it. So we did CVS testing. Got the results back on a Friday that he was just a carrier (healthy)...great news. Then 5 days later at 13w6d, we found out that we lost him. There is no way to prove what caused it, but because of the timing, it was diagnosed as a loss due to the CVS testing. It only happens to a small percentage, but as far as i'm concerned, I would never do it again or recommend it to anyone.
I agree with howleyshell. We had the NT scan done just so we could be prepared. Thankfully it came back normal. We would not have terminated no matter what but it would have been good to know if there was a problem.
oh Jen, my heart hurts for you. You do everything you think is "right" and then left with uncertainties like that... uugghh.
Statistically, from what I read, we do not have increased chances of this happening again. It's nothing we "carry" - but our age makes it prone to strike us, and not the PYT sitting next to me in the waiting room. I read one stupid study that says we have an increase of a quarter of one percent when it comes to striking twice. A stat I'm going to ignore for sanity's sake.
However, we're older, I have high BP, and repeat losses. I'm certainly going to go for NT scans and anything non-invasive with the next one (optimism) but still worried about how I would react if we found out something was again, horribly wrong.
Keep sharing, it's nice to read other's thoughts on this matter.
May none of us ever have to think long & hard about it ;-)
We did CVS and I am glad we did it. If we are lucky to get PG again we will do it again.
Our age and family situations make it such that we really need to think hard about how a special needs child will be cared for when we are no longer around if we decided not to terminate.
I also needed to know and didn't think I would be able to relax with a bunch of odds vs a diagnosis.
Hey I had a long weekend out of town so just catching up. Very interesting that it was trisomy 13. I didn't expect that. How are you doing? I mean.. I'm sure it's still very hard to grieve the loss. There's just so much to think about. I thought maybe you'd have a coag problem like me. Probably somewhat comforting to know there is nothing you did wrong, or nothing you could've done to prevent it..
Anyway, for me I want to be prepared for abnormalities so we had the NT done last pregnancy and this one. I also wanted to see the baby, (due to previous losses, it just makes me a crazy person sometimes).
Actually I don't know the results of the NT this time around, I just had it last Wednesday. I would be hesitant to do amnio or CVS just based on the small risk, but if I was in a situation that made me think there could be something wrong, I might.. it's just so hard to know.
I agree with Shell, I'm a "need to know" for preparation kinda gal. We don't have any "risk factors" per se. I'm 25, DH is 31, no genetic abnormalities in either family, but I want to be as prepared as possible if something were to be genetical abnormal.
We did the NT scan and b/w with Maya and we will with this LO too.
ditto this..I would want to be totally prepared to better help my LO on its arrival..vs being surprised
This is exactly how I feel..........I won't say my "side" of the whole termination vs. carrying a child that has defects through PG......but.....I feel that these tests are available and should be used. I would want to be prepared.
I have a friend who declined all tests.......they saw some "small" abnormalities at the 20 week u/s and against all doctor's recommendations did not do an amnio or any further u/s's. Her DD was born with Down's and they were in shock. I cannot imagine being unprepared for something like that.......
If I ever had an "abnormal" NT Scan (or any other abnormal b/w....) I would go straight to the amnio no questions asked.....