Any over 35 moms elect for CVS/Amnio after negative NIPT results?

[Anonymous]

I was 36 with my first and was fine with just the diagnostic screening. I'm 38 now and trying for number 2 and will likely be 39 at delivery and I think this time I'll get an amnio as well. My understanding is the risk at 39-41 is a lot higher than it was at 36, but I'll talk to my doctor. Also, my partner is now over 40 and he wasn't with our first and I understand that increases risk as well.

[Anonymous]

Anonymous wrote:Normal NIPS for both. Also did amnio for both because I wanted the microarray. NIPS only tests for a few “common” trisomies. Much more can be picked up with a microarray via amniocentesis. I didn’t want to do CVS because sometimes there’s weird placental mosaicism stuff, but had my NIPS been abnormal, may have done CVS instead of waiting for amnio. Also, FWIW, I didn’t thinks amnio was any worse than doing a flu shot.

I was just going to ask this.... everyone seemed so assured after the NIPT but it only tests for a few abnormalities. There are thousands of conditions out there or am I missing something? I thought the NIPT was just a first level test.

[Anonymous]

Anonymous wrote:I’m glad you are comfortable with your decision, but just for the sake of education, I’ll repeat it. Microarray trees for more than NIPT and nuchal. If you want to know as much as possible, so that. If you are comfortable being tested for only the three main trisomies, then no need. Obviously most people are having a healthy baby. Hope everything continues to go well and you have a happy, easy pregnancy

This is correct.
In retrospect I should have done the amnio but my OB talked me out of it. It was hard to find a real genetics person who could actually give advice. So we skipped it, and just did the NIPT.

Ps the NIPT microdeletion tests are sketchy. The trisomy tests they do seem well-validated. But as of a few years ago at least, the microdeletion assays were fairly secretive and I would not trust them.

Pps my baby was totally healthy. Yay. Just saying that I used the wrong strategy back then. Others might be happy with just the NIPT, but I’m a statistics person and I would have wanted more information (and known how to make decisions based on it.)

[Anonymous]

Anonymous wrote:

Anonymous wrote:Normal NIPS for both. Also did amnio for both because I wanted the microarray. NIPS only tests for a few “common” trisomies. Much more can be picked up with a microarray via amniocentesis. I didn’t want to do CVS because sometimes there’s weird placental mosaicism stuff, but had my NIPS been abnormal, may have done CVS instead of waiting for amnio. Also, FWIW, I didn’t thinks amnio was any worse than doing a flu shot.

I was just going to ask this.... everyone seemed so assured after the NIPT but it only tests for a few abnormalities. There are thousands of conditions out there or am I missing something? I thought the NIPT was just a first level test.

The NIPT only specifically tests for a few abnormalities, but can also pick up on other partial abnormalities that would then indicate further testing.

I only had NIPT with my second at 38 and did not do CVS or amnio. Baby is 10 months.

[Anonymous]

I only did NIPT with my third at 35. Now am 38 and am 24 weeks pregnant with the fourth. This time also did NIPT only.

[Anonymous]

My OB says not to do it if the NIPT comes back negative. There is no need and there's a risk of miscarriage.

[Anonymous]

Anonymous wrote:My OB says not to do it if the NIPT comes back negative. There is no need and there's a risk of miscarriage.

My OB says that if there are conditions that you would terminate for you shouldn't trust the NIPT and the risk of miscarriage is miniscule to the point it shouldn't factor into your decision to do diagnostic testing.

[Anonymous]

I did IVF, and PGT and CVS basically test the same cells. I did get the NIPT for reassurance, and then if anything odd were seen at my NT or anatomy scan I would go forward with an amnio.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I'm the OP of this thread and I'm now 17 weeks along. my NT scan came back totally normal and both my MFM and OB recommended against CVS/amnio at this point, so I followed their rec. My MFM did say that if anything concerning comes up at the anatomy scan, we could revisit doing an amnio at that point.

Thanks for the update. Glad you went with what the OB and MFM said (which is what several of us were telling you).

NIPT/Nuchal are Screenings. They are in no way diagnostic. Had a friend under 35 have both and both looked good and gave birth to a baby with Down's syndrome.

But also they only screen for a couple of things. An amnio can catch much more. I don't understand why people are so afraid of amnios. The risk of a complication from it so absurdly low. And even lower with an extremely experienced doctor. The fear mongering over amnios really needs to stop. I had people tell me "the needle is so huge, it's so painful etc...). The needle is a regular size, the actual test lasts under a minute and the pain was extremely minimal (really not even pain-just weird/uncomfortable). And even with amnio and even with extended microarray you still can't test for EVERYTHING but I wanted to test for everything that I could.

I am reviving this thread bc it’s an issue I expect I may be grappling w/ in a few short weeks.

First of all, I am really worried abt my OB trying to ‘talk me out of’ an amnio. I am still waiting on my NIPT results, so all very premature right now (obvi if NIPT suggests something, I am sure my dr will recommend amnio). But assuming the NIPT suggest very low risk, I really want to have the confidence to demand I get the amnio. This is information I very much want and I agree that the discussions of the risks of the amnio are highly unscientific. People cite “Risks” but w/ no data, context or anything. Really don’t find the discussion of the risks compelling at all.

Second though, while i understand the NIPT is NOT diagnostic, why does my dr sheet on it say that it’s 99% accurate for Down syndrome? How could that be? Down syndrome is not the only thing I care about, so regardless of that, I want the amnio but I am curious given all the statements on this thread abt how the NIPT isn’t diagnostic. If it’s right 99% of the time abt presence of Down’s syndrome, that’s pretty meaningful. Again, does not change my view of amnio as I am not only interested in Down’s

[Anonymous]

I'm 35 and pregnant with my third (due 3 weeks before I turn 36). Two healthy children at 31 and 34. I didn't elect to do an amnio or CVS after I got a negative NIPT test. My OB also never suggested it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I'm the OP of this thread and I'm now 17 weeks along. my NT scan came back totally normal and both my MFM and OB recommended against CVS/amnio at this point, so I followed their rec. My MFM did say that if anything concerning comes up at the anatomy scan, we could revisit doing an amnio at that point.

Thanks for the update. Glad you went with what the OB and MFM said (which is what several of us were telling you).

NIPT/Nuchal are Screenings. They are in no way diagnostic. Had a friend under 35 have both and both looked good and gave birth to a baby with Down's syndrome.

But also they only screen for a couple of things. An amnio can catch much more. I don't understand why people are so afraid of amnios. The risk of a complication from it so absurdly low. And even lower with an extremely experienced doctor. The fear mongering over amnios really needs to stop. I had people tell me "the needle is so huge, it's so painful etc...). The needle is a regular size, the actual test lasts under a minute and the pain was extremely minimal (really not even pain-just weird/uncomfortable). And even with amnio and even with extended microarray you still can't test for EVERYTHING but I wanted to test for everything that I could.

I am reviving this thread bc it’s an issue I expect I may be grappling w/ in a few short weeks.

First of all, I am really worried abt my OB trying to ‘talk me out of’ an amnio. I am still waiting on my NIPT results, so all very premature right now (obvi if NIPT suggests something, I am sure my dr will recommend amnio). But assuming the NIPT suggest very low risk, I really want to have the confidence to demand I get the amnio. This is information I very much want and I agree that the discussions of the risks of the amnio are highly unscientific. People cite “Risks” but w/ no data, context or anything. Really don’t find the discussion of the risks compelling at all.

Second though, while i understand the NIPT is NOT diagnostic, why does my dr sheet on it say that it’s 99% accurate for Down syndrome? How could that be? Down syndrome is not the only thing I care about, so regardless of that, I want the amnio but I am curious given all the statements on this thread abt how the NIPT isn’t diagnostic. If it’s right 99% of the time abt presence of Down’s syndrome, that’s pretty meaningful. Again, does not change my view of amnio as I am not only interested in Down’s

It's not just down syndrome. It's trisomy 13 and others.

[Anonymous]

I only did NIPT. I felt like there was some further comfort from the NT ultrasound, screening blood work at 16 weeks, and the detailed 20 week anatomy ultrasound. But of course none of that is as definitive as amnio.

We needed IVF to get pregnant so the thought of even a tiny miscarriage risk (agree the % is objectively v low) was a nonstarter for me when everything else was clear.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I'm the OP of this thread and I'm now 17 weeks along. my NT scan came back totally normal and both my MFM and OB recommended against CVS/amnio at this point, so I followed their rec. My MFM did say that if anything concerning comes up at the anatomy scan, we could revisit doing an amnio at that point.

Thanks for the update. Glad you went with what the OB and MFM said (which is what several of us were telling you).

NIPT/Nuchal are Screenings. They are in no way diagnostic. Had a friend under 35 have both and both looked good and gave birth to a baby with Down's syndrome.

But also they only screen for a couple of things. An amnio can catch much more. I don't understand why people are so afraid of amnios. The risk of a complication from it so absurdly low. And even lower with an extremely experienced doctor. The fear mongering over amnios really needs to stop. I had people tell me "the needle is so huge, it's so painful etc...). The needle is a regular size, the actual test lasts under a minute and the pain was extremely minimal (really not even pain-just weird/uncomfortable). And even with amnio and even with extended microarray you still can't test for EVERYTHING but I wanted to test for everything that I could.

I am reviving this thread bc it’s an issue I expect I may be grappling w/ in a few short weeks.

First of all, I am really worried abt my OB trying to ‘talk me out of’ an amnio. I am still waiting on my NIPT results, so all very premature right now (obvi if NIPT suggests something, I am sure my dr will recommend amnio). But assuming the NIPT suggest very low risk, I really want to have the confidence to demand I get the amnio. This is information I very much want and I agree that the discussions of the risks of the amnio are highly unscientific. People cite “Risks” but w/ no data, context or anything. Really don’t find the discussion of the risks compelling at all.

Second though, while i understand the NIPT is NOT diagnostic, why does my dr sheet on it say that it’s 99% accurate for Down syndrome? How could that be? Down syndrome is not the only thing I care about, so regardless of that, I want the amnio but I am curious given all the statements on this thread abt how the NIPT isn’t diagnostic. If it’s right 99% of the time abt presence of Down’s syndrome, that’s pretty meaningful. Again, does not change my view of amnio as I am not only interested in Down’s

It's not just down syndrome. It's trisomy 13 and others.

Thanks, agreed and understood. I am the poster that revived this thread. And FYI to anyone reading – I am 38 and will be 39 if I am so lucky to deliver a baby from this pregnancy. I would probably feel differently about an amnio if I were under 35.

[Anonymous]

To the poster who revived this thread -- I will also be 39 at the time of birth, had entirely unremarkable/non-concerning NIPT results, and had an amnio nonetheless. (We initially planned and tried to have a CVS, but due to placenta placement couldn't have the procedure and needed to wait until we could have the amnio.) Fortunately, the amnio results were also reassuring, but I would 100% do it again. For us, the risk of an issue with the baby was less tolerable than the risk of a miscarriage from the CVS or amnio. The NP we spoke with at our OB practice did gently try to talk us out of it. No one at Sibley MFM, where we had the failed CVS and the subsequent amnio, questioned our decision.

[Anonymous]

I’ll be 37 when I deliver (second pregnancy, first all healthy and normal in my early 30s). Currently at 22 weeks.

I didn’t do any further tests after the NIPT and scans all came back normal/negative. If anything had been positive, I would have done the diagnostic tests. I decided not to for two reasons. One, as others have said, my risk of an anomaly (for the “big” ones NIPT, etc looks for) was lower than the risk of miscarriage. Two, while you get a lot more data with the diagnostic tests, much of it can be confusing and non-determinative. I knew the potential mental health impact of potentially introducing a lot more unknowns wasn’t worth it without a screening test that indicated more needed to be done.

Contrary to a lot of y’all’s experience, however, my doctors made me feel like a freak for not getting it. I asked repeatedly if there were any risks factors or indications I wasn’t understanding and they said no, that they had no concerns.

I absolutely loathe the practice and hospital (a John’s Hopkins affiliate) I am using for this pregnancy though—looking for a new one—and they’ve consistently looked for ways to up their reimbursements, so I assume that could be it