Noninvasive prenatal tests (NIPT)

ttmills620 · October 2019

Good Morning Ladies,

I went to my first appointment on 10/15. My Doc confirmed my EDD is 6/8/2020 and he did a few tests and we received our first ultrasound. The little one looks good and Doc could see the heartbeat and scheduled me for another ultrasound in a few more weeks (10weeks). Doc begins to tell me about the NIPT test and I couldn't believe my ears. When I had my son (turning 9yrs old next month), I knew nothing about this test or it was still in the works. So I have been educating myself before I agree to take the test at my next appointment 11/12/19. Doc told me the benefits of this test and also inform me that I could find out the gender of the little one (wooow so early). What are your thoughts on the NIPT test? Are you planning on taking the test? Are you interested in finding out the gender?

diagonalley · October 2019

If it's non invasive, what's to worry?

I had blood tests with both of my previous pregnancies that tested for abnormalities and such and I was also able to find out the sex from those test. My doctor's office does this in lieu of a scan at 12 weeks because it gives them more accurate information.

Krizzista · October 2019

Yes, I am doing it for sure. If it is covered/you can afford the self-pay option, it’s worth it. Gender is just a bonus, but I’m eager to learn that too! My dr doesn’t do the 12 wk NT test either.

saladflambe · October 2019

I'm only 32, so my insurance will not cover it, so I'm not likely to get it.

I didn't even do the NT test last time tbh.

I will do an early sex scan when I'm like 16 weeks though.

pourmeanothermocktail · October 2019

It's not for me. I don't think of it as harmful at all, but it only gives information I really don't need/want.

We don't find out the sex. And I don't need to know about Down Syndrome (which is the biggest other thing it's screening for). It's also generally only a screening test, not a definitive test, so it can give a lot of "such and so is more likely" which can worry people a lot, and then you need a more invasive test later to confirm for sure yes or no.

So, some people may benefit from having the info, and that's fine, but depending on your "flavor" or anxiety, the amount of "false positive***" results can really wreak havoc on some people.

***Again, it's a screening test, so it's not actually a positive result, it's a "more likely than average" result. But, you'd still need amnio or similar to get a clear yes or no in regards to things like Down Syndrome, etc.

I may elect do do an early dating scan, just to date this.

Otherwise, I'll do a blood test just for me, to make sure I'm healthy, and I'll do the anatomy scan, because that would tell me if baby has medical condition that would definitely need preparation from me before birth, or a placental placement issue that could disqualify me from home birth, especially with a previous cesarean.

But again, those are just *my* personal reasons. Everybody-you do you.

kiki75 · October 2019

We will be doing it.

*TW* Some people seem to think that since termination wouldn’t be the right choice for them why would they do the testing? First, because those conditions often come with other medical issues so this gives the medical team an opportunity to pay extra attention in those areas. It also gives you time to carefully consider some choices you may have to make soon after birth. But also, for me, I would prefer to be mentally prepared, especially for the conditions that are not compatible with life.

Under 35, it was covered under my insurance but the nurse warned us that if we elected to include the sex on our testing, it would code differently and we’d likely get a bill for $300ish. Which does irritate me. I don’t like people focusing on sex and losing sight of the actual purpose of this testing but sex chromosomes are a place where there could be issues so it should be covered.

If you do not want to screen for genetic issues but you do want to find out the sex before the anatomy scan, you can go with a cheaper test like Sneak Peek which is only $80 or so.

We are still discussing if we want to find out the sex this time or wait like last time.

pourmeanothermocktail · October 2019

@kiki75 Just for reference, I don't think the testing is a bad idea, just not right for me. I have close friends with many conditions, including Down Syndrome. I know that there are frequently heart issues associated. I also know the heart issues, or other medical conditions associated would come up in the anatomy scan, which is more diagnostic than screening, so for me, handling my anxiety does better learning about these things at scan. That's all.

TW loss

I can totally understand why some people prefer to screen earlier, but they have such a high "false positive" rate, it's bad for me. I've had several friends told that there is a high chance of baby having trisomy 13 from screen, which is fatal, just to worry for weeks until anatomy scan or amnio is possible, to find out everything is fine.

That would be worse for me. But, just for me.

End TW

A heart condition associated with Down Syndrome is something I worry about knowing before birth, but learning at 20 weeks is enough time for me to make arrangements and plans and mentally prepare.

kiki75 · October 2019

@pourmeanothermocktail To be clear... I wasn’t subposting you or anything. Mine just happened to be directly after yours. I had started writing, had to do some stuff & came back & finished it.

pourmeanothermocktail · October 2019

kiki75 said:

@pourmeanothermocktail To be clear... I wasn’t subposting you or anything. Mine just happened to be directly after yours. I had started writing, had to do some stuff & came back & finished it.

Cool, thanks. If I came across as bitchy, I'm sorry. I'm just pretty direct and opinionated, and too often, especially regarding pregnancy and birth, have been pushed and ridiculed, etc. And haven't slept well in 4 years...so I don't always do great reading or conveying tone nicely.

chichiphin · October 2019

*lurker from March BMB* just here to support @kiki75 and her reasoning for doing genetic screening - she is right, the planning that comes with a diagnosis of one of these chromosomal anomalies is a very heavy burden.

Also, a false "positive" on an NIPT is pretty rare. It is true that a risk score is assigned based on the fetal fraction DNA picked up in the blood. So, for example, you may get a 1:5000, 1:50 or a 1:100,000 chance of something like T21, T18, T13 or Turners. Usually these tests are 95-98% accurate in their risk scores. You then can do ultrasounds and speak with a genetic counselor to discuss what it means, and then do amnios or cvs screenings to get a "positive/negative" for that particular condition.

I want to caution people from thinking this is just for down syndrome and that false positives are rampant. T13, T18, and other sex anomalies can be devastating and will need interventions at birth or you may choose to TFMR based on these conditions after speaking with physicians and OBs. MH and I went through this entire process and our first ended in TFMR from T13 once we got all of the facts and after seeing multiple providers.

With this second pregnancy, we immediately did the NIPT AND the NT ultrasound screening to measure the nuchal fold.

If anyone has any questions about our genetic screening testing - I'm a PM away.

kimber308 · October 2019

Anyone have an idea how much it costs without insurance coverage?

Krizzista · October 2019

I had the panorama test done my last pregnancy and did self pay. It was $250

diagonalley · October 2019

I did panorama last time and paid $200. $100 for each part - the one part of it I won't have to redo because it tests for whether you are a carrier for certain things or not and that doesn't change. So I'm hoping at most it will be $100 this time.

kimber308 · October 2019

Thank you, both!

runwmusic · October 2019

@kimber308 I would definitely call and ask. My Dr said people who weren't covered by insurance had to pay 3k put of pocket.

kiki75 · October 2019

@runwmusic Whoa! 😮 That is... wow.

Definitely never hurts to call insurance, the doctor, and the testing company. A number of the testing companies have a cash price that is very different from the insurance price. If you have to, you can always contact a different company than the one your doctor’s office usually works with and I would bet they have a way to send you a kit that you can take to a local lab to do the blood draw. My OB’s office (and it’s likely also the network it’s in) put the order in and sent me home with the kit and I just took it to the lab closest to my house to do the draw & send it in. Which was nice because it saved doing a separate appointment for the draw. Ours was Counsyl and I think their cash rate is $300.

Pictures from last time in case you’re curious. It was a two vial draw. I’ll resize the pics later when I’m on desktop.

Image: https://us.v-cdn.net/5020794/uploads/editor/ax/hjxeo3c6lx0z.jpeg

kyrwyn · October 2019

You can also contact the testing company directly if you're going to pay out of pocket. Some of them have reduced rates for direct billing vs what they bill the insurance company (which is probably where the $3k comes from). They may even work with you on pricing if you're in certain demographics. There's a balance these companies strike between pricing and building up a large customer base, so it never hurts to look into it. Check out their website or ping their customer service contact!

(My prior professional life was in biotech, specifically in clinical diagnostic development.)

kimber308 · October 2019

I called the company today. The out of pocket price is just under $400. They did a check with my insurance and it seems like they'll cover some and it'll cost $125, but under $400 worst case scenario. A far cry from $3K! I'm so sorry to hear that @runwmusic. Thanks, everyone!

ambosb · November 2019

Hi! I am 8 weeks today.( due 6/15/20) I had my 1st ultrasound last Wednesday and I am scheduled to go in for my bloodwork for the NIPT test Nov. 26, and then go back Dec 9th for results, gender and another ultrasound. My son is almost 16 and I also have not heard of this when he came along! My Doctor advised me because of my age (39) it is a great thing to do. However, I am very nervous and anxious to wait!

Noninvasive prenatal tests (NIPT)

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