Noninvasive Prenatal Testing (NIPT)

notthefather

If you are choosing to do NIPT:
Which test are you using?
Why did you choose that test? 
When will you have it done?

notthefather

My husband teaches biology and one of the agreements when considering trying for a second was having testing done to determine the risk for all the scary disorders he teaches about. I'm leaning towards Panorama with Microdeletions because it seems to have the broadest testing but also looking at MaterniT21 Plus. Does anyone know if there is an accuracy advantage to waiting until 11 weeks instead of 9-10? 

arhodes6

That's so funny you posted about this, I was just looking up what NIPT is on doctor Google. My midwife suggested I get it done because DH has a mild case of spina bifida, which can be dectected with a NIPT. I have no clue what the different tests are, so I'm looking forward to hearing what you all are doing. 

missnc77

We didn't do it the first time around, but we're going to do it this time. I am turning 35 the same year that the baby will be born, but I'll only be 34 at the time which means we'll pay OOP.  We're going to do Mat21. I think we're mostly curious above all on what it will say. I read some scary things about false positives and asked my OB about it. What she said was kind of interesting - the older you are, the more accurate. So, it works better for a 33 year old vs a 23 year old. 

We've talked about this in another thread when this board started rolling, and I was surprised to see how many women are interested in it compared to my last BMB. I don't know if that's the difference two years makes, or if it's just a different group of women. 

tlcl13

We are using Verifi by Progenity. I am only 24 so it will have to be paid for out of pocket but they are offering it at very very low cost right now through the health system where I am a patient. We are doing it mainly to learn the gender early but am also curious about genetic abnormalities. My next appointment is at 11 weeks and they will take the blood for it then! 

riansmommie

I won't be getting it done, but all of my friends that have done the testing used the Mat21 one.

DDRRT1982

We are offered the panorama.  I wish I could say that I researched them all and have a scientific  reason for choosing it, but I dont.  It's just what my doctor orders and my insurance covers.  However, the panorama seems to be a good test.  They take my blood on August 24.  I will be 11w2d.

heatherdubrow

We're doing one called council(spelling?). It tests for the big life threatening abnormalities and can also tell you the sex. Doing that at my next appt on the 15th.

DDRRT1982

notthefather said:

My husband teaches biology and one of the agreements when considering trying for a second was having testing done to determine the risk for all the scary disorders he teaches about. I'm leaning towards Panorama with Microdeletions because it seems to have the broadest testing but also looking at MaterniT21 Plus. Does anyone know if there is an accuracy advantage to waiting until 11 weeks instead of 9-10? 

My doctor made sure I was at least 11 weeks due to accuracy before scheduling it.  I have read in other forums where women have had to get the test redone for having it done too early.  Not enough DANA in our blood is what it claims.  I have had this done on two other babies at 11 weeks and all was good with getting the information.

fullofhope25

I am considering the MAT21. I am currently 35 and will be 36 at the time of delivery.

missnc77  I am also concerned about false positives. 

lund

@heatherdubrow is the Counsyl testing just a blood test?

ishmoney

I plan on having whatever tests the midwife recommends.  As a AMA mom, I am very curious.

livingthedream-3

Which test are you using? Mat21
Why did you choose that test? Because that is the one offered by the genetic department at my OB's office. I'm having it done because I'm old.
When will you have it done? 11w-ish

pghctwife

I will be. I haven't researched honestly, and I'll probably just do whichever one my midwife recommends. We'll discuss it to,orrow at my appt. I never did it before... in the past we declined all optional testing. I do know it will be 10-13 weeks, and will include an ultrasound first. LSt fall my mw explained that they do that first to make sure that there isn't anything that shows up on the screen as a problem indicating differing blood testing (she didn't say it but I'm sure checking viability as well).
I'm also not sure if my Edd will change from my first u/s, and she said I could get another one just to check so I guess that will affect dates possibly. Regardless iwth vaca etc it'll prob be late aug/early sept.
Im AMA, turned 37 yesterday, 

ishmoney

@pghctwife, happy birthday!

pumpkinpancake

I did panorama with my first, and will probably do either that one or one of the others again this time. Haven't talked to my OB about it yet because I haven't had my first appt, but I will discuss it with her then to see which one she recommends. 

chasingroygbiv

Mat21 and they said around 11 weeks, which is soon. 

bettyvonsomethingstein

I've done both Harmony and Materni21.  They are so similar.  I do whichever one the doctor gives me the paperwork for -- I assume she has her preferences for a reason.

Both were ultimately covered by my insurance, but I did have to submit some extra paperwork to get it done.  There is usually a local rep from these companies that will help with what you need to get it covered.

eller-2

We will do whichever NIPT my doctor offers at 10 weeks, for peace of mind and/or to be prepared as best as possible if our baby has atypical chromosomes.

Re: accuracy, I did a lot of reading on NIPTs and false positives during my last pregnancy, and it does seem that they are more accurate (less likely to return false positives) the older the woman is.  The tests are highly sensitive and unlikely to return false negatives (although I'm sure they happen on rare occasions).  However, what's not really advertised (and my doctor did not explain this to me last time), is that the positive predictive value of the test is not even close to 99% - for a 30-year old woman, I believe it is close to 50%, so if you are 30 years old and receive a positive on the screening, it is about 50% likely to be a real positive and 50% likely to be a false positive.  So do know that, as sensitive as the test is, there are false positives.

fiddleRN79

I am also AMA (38) and we are going to use Progenity. I can have my blood drawn this Thursday. I would like to know if I am a carrier for any of the genetic disorders that they test for. If I come back positive, then they will test DH for free. I think that is a good deal. I also want to know if we're having a boy or girl as soon as possible (due to recent history). DH and I have not decided about doing the Quad Screen though. My results were awful with my third child (he is fine, just super short and skinny). My Trisomy 18 risk was 1/30. I was incredibly stressed thinking they missed something on the ultrasound.  I don't want to feel that way with this baby. I do need to decide though. We are over an hour from a high-risk facility. If we do need specialized care then I want to know sooner than later. Decisions decisions.  

day38

I'm strongly considering doing it. With my 1st, I ended up doing the Harmony test after my NT scan came back "positive" (ie higher risk than I should have had given my factors) and it was covered by insurance for that reason. It was the NIPT offered by my MW's office/hospital and I didn't ask for a different one. It took forever to get results because of some paperwork hiccups and I hit the holiday season with timing (I was around 14 weeks when I took it). I'll talk to my MW, but I'm fairly certain it would be out of pocket if I go straight for it. Not sure about timing either, whatever my midwife recommends.

becausescience

We don't plan on doing NIPT unless a maker is found during the NT scan. Also, is the NT scan less common now with NIPT available or are you guys planning on doing it as well?

arhodes6

eller-2 said:

We will do whichever NIPT my doctor offers at 10 weeks, for peace of mind and/or to be prepared as best as possible if our baby has atypical chromosomes.

Re: accuracy, I did a lot of reading on NIPTs and false positives during my last pregnancy, and it does seem that they are more accurate (less likely to return false positives) the older the woman is.  The tests are highly sensitive and unlikely to return false negatives (although I'm sure they happen on rare occasions).  However, what's not really advertised (and my doctor did not explain this to me last time), is that the positive predictive value of the test is not even close to 99% - for a 30-year old woman, I believe it is close to 50%, so if you are 30 years old and receive a positive on the screening, it is about 50% likely to be a real positive and 50% likely to be a false positive.  So do know that, as sensitive as the test is, there are false positives.

Yikes that scary. I am 30 but my midwife suggested I get it because my DH has a mild case of spina bifida and it would change where we would deliver and how we would deliver. I didn't do it with my first, but I wasn't with my current midwife practice. Having a 50% chance of a false positive is pretty scary. My midwife said she would want to pair the NIPT with an NT u/s to check for markers, but we aren't at risk so maybe it's so she can check for that false positive? 

heatherdubrow

@lund yes! It's the only one my Dr office offers

vflux33

I was told I don't qualify for NIPT because I'm not turning 35 until 2 months after EDD. MH and I did 23 and me so I'm not worried about carrier stuff (I'm a carrier for Canavan but he's not so we're good). I'll be getting the NT scan and bloodwork to determine risk for downs etc... CVS doesn't work half the time for twins and amnios have a higher risk of miscarriage for twins so hoping to avoid those. Does anyone know if it's worth it to pay OOP for NIPT for twins given no concern about carrier issues? 

eller-2

@becausescience, it seems like the NT scan wouldn't be as common (or necessary) for those doing the NIPT, but my doctor had me do both this past January.  I am with a new doctor now, so I'm not sure if she'll also have me do the NT scan on top of the NIPT for this baby.

heatherdubrow

@vflux33 I'm not AMA. The max oop cost for the test I'm doing is $350, but should be lower with some insurance coverage.

hullabalou

vflux33 said:

I was told I don't qualify for NIPT because I'm not turning 35 until 2 months after EDD. MH and I did 23 and me so I'm not worried about carrier stuff (I'm a carrier for Canavan but he's not so we're good). I'll be getting the NT scan and bloodwork to determine risk for downs etc... CVS doesn't work half the time for twins and amnios have a higher risk of miscarriage for twins so hoping to avoid those. Does anyone know if it's worth it to pay OOP for NIPT for twins given no concern about carrier issues? 

We both had gene karyotyping done as part of our RPL testing but I actually don't know what that means. Does someone more knowledgeable about that know if it would have told us if we were carriers for genetic disorders?

Elizabella85

We didn't do it last time because my RE released me at 10 weeks but I didn't get into my OB until 12 weeks and I wasn't prepared to pay for a test out of pocket THAT day. 

This time we'll use Progenity. We think it's only going to be $99 out of pocket (although who knows if anyone at our insurance company really knows) so they'll draw blood at my 10 week appointment. 

vflux33

@heatherdubrow That's pretty affordable, which is great, but I'm still confused on accuracy for twins. Apparently there are more false positives and if there is something wrong you won't know which one or both. And is NIPT that much different/better than the sequential integrated screening blood test combined with the NT scan? I'm obviously going to ask my OB about this, but I'm just trying to grasp as much info as I can before then. 

heatherdubrow

@vflux33 I have no idea, those are great questions!

jeb0927

With our first, we did Harmony to detect chromosomal abnormalities. It was offered as an option as my OB does not do the NT scan. I was only 28 at the time. 

We will do it (or whatever test is offered - last time they referred out to the MFM people in town for the test) again. Insurance covered it in 2013, so I assume it will again. There are some abnormalities that would create a decision point for us, so we would like to know. Particularly since we do not have the NT scan as an option.  I'll find out on Thursday when and what exactly it will be!

jeb0927

@becausescience
My OB didn't offer NT in 2013, so I doubt they do it now. They have all the equipment right in office, they just explained that because the more sophisticated tests were available in town (with a referral), they prefer that route. I'm sure it depends a lot on your doctor.

livingthedream-3

jeb0927 said:

@becausescience
My OB didn't offer NT in 2013, so I doubt they do it now. They have all the equipment right in office, they just explained that because the more sophisticated tests were available in town (with a referral), they prefer that route. I'm sure it depends a lot on your doctor.

The Mat21 (and other NIPT testing) is just a blood draw that is sent to a national office. My doctor's office doesn't do it in house

vflux33

@hullabalou I don't know anything about gene karyotyping. Hopefully someone else here does. We just did the direct to consumer 23andme one because we found out through my doctor I was a Canavan carrier--I'm in an ethnic risk group which is why I was tested-- it's super rare outside of Ashkenazi Jews so probably no one else in this BMB has heard of it or is effected-- but this made us very paranoid and our insurance wouldn't cover the less common carrier diseases for my risk group so we just paid the 400$ bucks to each get the saliva test through 23andme to put our minds at ease. 

jeb0927

LivingTheDream said:

jeb0927 said:

@becausescience
My OB didn't offer NT in 2013, so I doubt they do it now. They have all the equipment right in office, they just explained that because the more sophisticated tests were available in town (with a referral), they prefer that route. I'm sure it depends a lot on your doctor.

The Mat21 (and other NIPT testing) is just a blood draw that is sent to a national office. My doctor's office doesn't do it in house

Right. My OB doesn't do the NT scan, even though they have the equipment. They refer out to MFM for the blood draws with a genetic counselor (my OB doesn't have a genetic counselor so they do not like to do genetic counseling), which are then sent out.

babybluu

I really want to get it done for peace of mind, but my insurance (tricare) doesn't cover it. I have no idea how much it will cost OOP. I suppose I could call and ask. But because of my age and other factors, I really am at a low risk for any abnormalities, so I don't think DH will be down for spending the extra money. 

muggle621

Thanks for starting this @notthefather!! I feel like I have learned a lot already about NIPT already. 
I am having Mat21 done on August 28 @ 11 wks. I am also using this test because it's the only one my practice offers. 

mdfarmchick

I think my friends that have used the same OB said that he offers Panorama. I hadn't even heard of it two years ago with my first but we lived in England at the time and spent most of the first trimester back in the States for my hubby to take a training class for work so... I tried reading up on it a while ago and I didn't see a ton of differences between the different ones. I may have to pay out of pocket, but I'll know more after my appointment Wednesday. 

@vflux33 I have also read that it is not recommended with twins so let me know what your doctor says.

kmalls

Super late to this party, but FWIW, here are my insurance experiences with NIPT:

My last two pregnancies were on two different insurance plans. With pregnancy #1, the Panorama test was considered "out of network" and insurance wouldn't cover it. This actually proved to be a good thing, as Panorama offered a special rate for those whom insurance wouldn't cover -- I think it was about $120 out of pocket. We jumped at it. 

With pregnancy #2, the Panorama test was considered "in network" with out new insurance company, and insurance would cover it, BUT that meant it was subject to our deductible. We had a high-deductible plan at the time and we would have had to pay $3k (our entire deductible) to have the test done. We declined. 

This also goes to show the f'ing racket that is all things medical. "No insurance coverage? We'll charge you $120! Oh, your insurance covers it? Well we charge them $3,500." It's so ridiculous. 

This time I'm AMA and it's covered 100% so the point is moot. 

ksmwalters

I've been wondering about this, but haven't decided if we'll do it or not. I'll be 34 in October, so I'm not sure it would be covered by our insurance. Definitely going to talk to my midwife at my 10 week prenatal workup, though. I probably won't do it if it's super expensive, just because neither my husband nor I have genetic risk factors. (Plus my mom had my brother and I at 33 and 35 in the early 80s, which was like a dinosaur back then, and we didn't have any issues. Fingers crossed!)