NIPT test if low risk

[Anonymous]

I’m 13 weeks and was concerned about the marketing of the genetic tests. I was also concerned about the false positive rates which would give me unnecessary stress. Also the companies are not regulated. To top it all off my insurance didn’t cover the test and I just didn’t want to get stuck wit a bill even though the promised they would cut me a deal I heard of some women getting billed later by progenity. Anyway I called my insurance and they confirmed they would over the NT so I did that bad 12 weeks. I also figure that some fetal anomalies are caught at 20 week scan so if it’s really terrible we’d find out then.

[Anonymous]

What do you mean they aren't regulated? Most laboratory tests are not FDA regulated, that's just not how it works. There all sorts of guidelines and statistics these laboratories must prove to be CLIA approved or NY state (notoriously hard) approved . NIPS is a SCREEN. It is not diagnostic. If you want a definite answer, get a CVS or amniocentesis. Your strep test isn't 100% either. A pap smear isn't 100% either. Mammogram, not 100%-plenty of false positives and false negatives there. These are SCREENS. They identify a high or lower risk. They are not telling you for sure. So yes, they will sometimes be wrong. That is how medical screening generally works. Rant over.

[Anonymous]

Anonymous wrote:I’m 13 weeks and was concerned about the marketing of the genetic tests. I was also concerned about the false positive rates which would give me unnecessary stress. Also the companies are not regulated. To top it all off my insurance didn’t cover the test and I just didn’t want to get stuck wit a bill even though the promised they would cut me a deal I heard of some women getting billed later by progenity. Anyway I called my insurance and they confirmed they would over the NT so I did that bad 12 weeks. I also figure that some fetal anomalies are caught at 20 week scan so if it’s really terrible we’d find out then.

I'm not sure who told you the companies are unregulated...they are definitely FDA approved. Having an abortion at 10 weeks vs 20 weeks is very different. It's a simple procedure vs basically giving birth and very risky.

[Anonymous]

Anonymous wrote:

Anonymous wrote:We did the NIPT and they got the gender wrong. Caused a lot of angst and I will never do it again. Geneticist at Myriad said 1/100 are wrong, which is pretty high and unreliable, especially if paying out of pocket.

Yes that's what 99% means. And no that's not pretty high. Just like birth control, it's not perfect. It's very rare that any test is 100%.

If you read literally any thread around here, people comment over and over again the tests just *cant* be wrong. I’m telling anyone who is reading this that *yes* they can and often are. 1 out of every 100 tests they do being completely wrong is incredibly high considering how many they do, and especially for a test that’s supposed to bring you peace of mind.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:We did the NIPT and they got the gender wrong. Caused a lot of angst and I will never do it again. Geneticist at Myriad said 1/100 are wrong, which is pretty high and unreliable, especially if paying out of pocket.

Yes that's what 99% means. And no that's not pretty high. Just like birth control, it's not perfect. It's very rare that any test is 100%.

If you read literally any thread around here, people comment over and over again the tests just *cant* be wrong. I’m telling anyone who is reading this that *yes* they can and often are. 1 out of every 100 tests they do being completely wrong is incredibly high considering how many they do, and especially for a test that’s supposed to bring you peace of mind.

You do realize how much better current NIPS is than what’s been around in the past like quad screening or the first trimester screen at catching this stuff right? Also, the fetal sex is not the point of the testing. For chromosome abnormalities, the sensitivity is very high. Like 99.7% for Down syndrome. That doesn’t mean 1/100 tests are wrong. That’s more of less true of the fetal sex (again, not the point of the testing). So only about .3% of pregnancies with Down syndrome are kissed and only about that many are a false positive. And again a false positive isn’t saying the baby has Down syndrome. It’s saying that there’s a high chance and you should do diagnostic testing if you went to know. I guess you shouldn’t ever have a mammogram or colonoscopy. Those have way worse sensitivity and specificity statistics.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:We did the NIPT and they got the gender wrong. Caused a lot of angst and I will never do it again. Geneticist at Myriad said 1/100 are wrong, which is pretty high and unreliable, especially if paying out of pocket.

Yes that's what 99% means. And no that's not pretty high. Just like birth control, it's not perfect. It's very rare that any test is 100%.

If you read literally any thread around here, people comment over and over again the tests just *cant* be wrong. I’m telling anyone who is reading this that *yes* they can and often are. 1 out of every 100 tests they do being completely wrong is incredibly high considering how many they do, and especially for a test that’s supposed to bring you peace of mind.

Then don't get the tests. Some of us think that 99% is pretty Damn good. Think about 2,000 tests-there is likely around 20 people with incorrect results. That is a very small number.

[Anonymous]

If you would abort for something like Downs then get the test. It's a difference of finding out at 10 weeks vs finding out at 14 weeks, which is big. If you wouldn't abort for abnormalities not matter what, it's less of an issue and you'll find out at the NT scan.

[Anonymous]

Anonymous wrote:If you would abort for something like Downs then get the test. It's a difference of finding out at 10 weeks vs finding out at 14 weeks, which is big. If you wouldn't abort for abnormalities not matter what, it's less of an issue and you'll find out at the NT scan.

Nobody would find out at 10 weeks. Because the NIPT can't tell you definitely if the baby has downs. So most people would not just abort without knowing for sure. Which would require an early CVS at 12-13 weeks. So earliest they would "find out" would be like 13 weeks.

[Anonymous]

Anonymous wrote:

Anonymous wrote:If you would abort for something like Downs then get the test. It's a difference of finding out at 10 weeks vs finding out at 14 weeks, which is big. If you wouldn't abort for abnormalities not matter what, it's less of an issue and you'll find out at the NT scan.

Nobody would find out at 10 weeks. Because the NIPT can't tell you definitely if the baby has downs. So most people would not just abort without knowing for sure. Which would require an early CVS at 12-13 weeks. So earliest they would "find out" would be like 13 weeks.

Ok, but NT scan is still a screening test as well that necessitates several weeks of testing after that, so you're finding out at 17 weeks or so.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:If you would abort for something like Downs then get the test. It's a difference of finding out at 10 weeks vs finding out at 14 weeks, which is big. If you wouldn't abort for abnormalities not matter what, it's less of an issue and you'll find out at the NT scan.

Nobody would find out at 10 weeks. Because the NIPT can't tell you definitely if the baby has downs. So most people would not just abort without knowing for sure. Which would require an early CVS at 12-13 weeks. So earliest they would "find out" would be like 13 weeks.

Ok, but NT scan is still a screening test as well that necessitates several weeks of testing after that, so you're finding out at 17 weeks or so.

No. You can have a CVS between 10-13 weeks. preliminary results for straightforward things such as downs are available within a couple days. Then usually the full results about a week later. I don't know what you are talking about with "several weeks of testing". Unless you wait to do an amnio instead of a CVS there is no way you would have to wait until 17 weeks.

[Anonymous]

Can anyone provide more info on how they self-paid for ~150? I'm being quoted ~300

[Anonymous]

Anonymous wrote:I had 2 babies with the GW midwives and was offered the NT screen with both. I was in my late 20s and then early 30s for the two pregnancies. This was back in 2012 and 2016. I also opted for the NIPT with the 2016 pregnancy (and paid out of pocket for it - the cost was around $100).

Can confirm, has a baby with the GW midwives in 2019 and currently working with them for my second pregnancy — NT screen was offered (and indeed assumed when I was scheduling appointments although I guess I could have said no?) with both, as well as genetic counseling to let you discuss which tests you wanted to do.

[Anonymous]

Anonymous wrote:I wouldn’t recommend it. I’m assuming your insurance covers the NT scan, which is sufficient. That was my plan but after 3 separate ultrasounds the techs and the MFM could not get the necessary measurements (they said it was very unusual to not be able to get it.) So in order to have some sort of information I did the NIPT out of pocket and it showed a low fetal fraction which set off a whole series of tests and stress and turned out to be nothing. The MFM basically said I would have been better off doing the NT scan at my age (33) and with my history (no increased risks for anything.)

+1. My NIPT caused WAY more stress than it needed to. People who say it gave them peace of mind obviously didn’t have anything show up on it. False alarms happen all the time - the 99% accuracy you hear touted is only for Down syndrome. My NT gave me the most useful information on the baby’s anatomy, my single umbilical artery, etc.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I wouldn’t recommend it. I’m assuming your insurance covers the NT scan, which is sufficient. That was my plan but after 3 separate ultrasounds the techs and the MFM could not get the necessary measurements (they said it was very unusual to not be able to get it.) So in order to have some sort of information I did the NIPT out of pocket and it showed a low fetal fraction which set off a whole series of tests and stress and turned out to be nothing. The MFM basically said I would have been better off doing the NT scan at my age (33) and with my history (no increased risks for anything.)

+1. My NIPT caused WAY more stress than it needed to. People who say it gave them peace of mind obviously didn’t have anything show up on it. False alarms happen all the time - the 99% accuracy you hear touted is only for Down syndrome. My NT gave me the most useful information on the baby’s anatomy, my single umbilical artery, etc.

The NIPT is more accurate than the NT. Much, much more accurate.

PP did you have a genetic workup done on your child to confirm the sex chromosomes were normal?

[Anonymous]

I did it as a healthy 26yo. Couple hundred bucks if I recall correctly. Worth it for early noninvasive peace of mind and finding out the sex early. Particularly useful if you would abort for abnormalities early on but not later (20wks etc).