NIPT (Noninvasive Prenatal Testing)

mirdamae03 · October 2016

I'm sure there are a few of us in J17 doing or considering doing NIPT. At my 8 week appointment today the nurse gave me some information on Harmony, but I know there are also a few others (Maternit21, Panorama, etc.). Has anyone done these before with previous pregnancies that want to share any info? Or anyone considering doing the testing with this pregnancy that wants to discuss?

MotherofDragons · October 2016

It is customary for my OB to offer it to all patients however since I am high risk I had the NT scan at the preference of my high risk doc.

I want to ask if i can do it anyway because the results of the NIPT come back faster. The full NT/quad screen results weren't in for me until 18 weeks. I don't want to wait that long.

delujm0 · October 2016

I would do it if my insurance covered it - I just like to have as much information as possible - but I've heard that it can cost many hundreds of dollars out of pocket, and that it's only covered by insurance if you are considered high risk. If my doctor is going to consider me AMA I might do it, but I'm on the fence (my due date should be like 3 days before my 35th birthday).

I will say that I think it's a great option for people who are high risk or who have genetic disorders running in their families to make sure that the baby is healthy. But I do a massive side-eye on people that are all OMG I WANT TO KNOW THE SEX OF THE BABY 8 WEEKS EARLIER THAN THE ANATOMY SCAN SO I'LL DO THIS. It can take 2 weeks to get results because the labs are so backed up, I absolutely side-eye people that are just doing it for funzies, as that delays the response time for people that have actual genetic concerns that they are testing for (that opinion may be better served as a FFFC, but whatever).

Insurance did cover my NT scan and quad screen, so I did that. Not as accurate, but it was something. It came back with as close to a zero percent chance of issues as possible, so no further testing was necessary. but then our first pediatrician was a complete idiot, and told us at DD's 2 month appointment that she thought she might have Down Syndrome (based, apparently, on her almond shaped eyes (which look just like mine) and the fact that she didn't resemble DH or I strongly) and it was a whole thing where we freaked out for two weeks waiting to see a specialist who looked at DD for about 3 minutes and said "there is no way on earth this baby has Down Syndrome." Long story short, we have a new pediatrician now, and that whole experience made me really want the NIPT if my insurance would cover it or it would be affordable, so that I don't have to go through that again. I have heard that some doctors offices have deals with the labs that do the testing where if your insurance doesn't cover it, they just charge you a flat fee of like $95 or $200 or something like that...I'm going to ask my doctor about that and if I can make it work I will.

thankfully · October 2016

I'm interested. My MW went over the options, either the cell-free DNA or the traditional 1st tri screen with blood draw and NT scan. Although the cell-free DNA tests are not marketed as diagnostic, they essentially are, while the 1st tri screening is assessing risk. The pros of the cell-free DNA are the near-diagnostic level of accuracy and it's completely non-invasive. Cons, for me, would be cost since I'm low risk, insurance would not cover.

In the meantime I need to research the actual OOP cost. I know these companies usually offer discount vouchers. If it's doable I think that'll be my preference.

mirdamae03 · October 2016

Regarding the flat fee @delujm0 my nurse mentioned it'd be $135 if we do self-pay instead of filing through insurance. I have no idea if insurance would cover all/some of it or how much more our portion would be if we filed through that.

ETA: that's the cost quoted for the Harmony

mrlight · October 2016

My insurance will not cover NIPT, but I still want to do the testing so I called each of the 4 companies to find out the price for non-insured customers.

MaterniT21 $200
Harmony $130
Verifi $226 (They sometimes offer a "Peace of Mind" discount you may qualify for, dropping the price to $99.)
Panorama $795-$995

Keep in mind, I am in no way affiliated with any of these companies. These prices may not be set in stone, but these were the answers I got when I called. I thought all of the prices were very reasonable with the exception of Panorama.

Does anyone know if one test is necessarily better or more accurate than the others? It seems like they all test for the same things.

jgil85 · October 2016

I am highly interested in it due to chromosomal abnormalities that have occurred in my family. The nurse went over it this morning with me and they offer Verifi testing as early as 10 weeks. As far as insurance goes, they typically won't cover it because I'm not AMA but due to family history, they may cover it. Otherwise she told my that Verifi does peace of mind pricing for some people if they answer a questionnaire.

delujm0 · October 2016

@mirdamae03 and @mrlight that is awesome info on the costs, thanks! I'm definitely planning to ask my doctor about it. Though it would be kind of a bummer to miss the NT scan because I do really like to see the baby! I assume it's just one or the other and not both.

And I agree with @motherofdragons it does take a while to get full quad screen results. The NT scan and first round of blood work I did at 12 weeks last time, but there was one other thing they couldn't test until 16 weeks, I forget what it was. I got the 12 week results in about 4 days, released to me online, and that included the odds on Down Syndrome and Trisomy 13 and 18. I totally forget what the 16 week blood draw was for, but again that took an additional 3-4 days to get released to me. I want to say that one was spina bifida? but I can't remember. At any rate, I felt comfortable enough once I got the 12 week results to tell people about my pregnancy.

When is the NIPT done? Is that like 10 weeks, and you have results around 12 weeks? I have two friends that did it because they were AMA so it was covered by insurance, and another friend that was high risk due to type 1 diabetes, so her insurance covered it as well.

mirdamae03 · October 2016

I was told 10 weeks was the earliest, but she recommended I wait until 11. I'm not sure if the accuracy improves over that weeks time or where the suggestion spurred from. I am not sure if it's a one or the other thing. I'll probably opt do one or the other (mostly because I am not a fan of blood draws).

thankfully · October 2016

delujm0 said:

@mirdamae03 and @mrlight that is awesome info on the costs, thanks! I'm definitely planning to ask my doctor about it. Though it would be kind of a bummer to miss the NT scan because I do really like to see the baby! I assume it's just one or the other and not both.
When is the NIPT done? Is that like 10 weeks, and you have results around 12 weeks? I have two friends that did it because they were AMA so it was covered by insurance, and another friend that was high risk due to type 1 diabetes, so her insurance covered it as well.

I was told they'd draw it at my next appt, I'll be almost 11 weeks. They said results take around a week but that'll be right before Thanksgiving for me so I'd expect it to take a little longer.

I dont know if theres there's value in doing the NT scan to assess risk of non-chromosomal abnormalities in addition to doing the cell-free DNA test. I'll plan to ask my MW about that.

riverrainez · October 2016

With DS we did the NT scan at 12 weeks, which showed low risk, and NIPT wasn't covered so we opted not to do that. But then at the anatomy scan at 20 weeks they found an echogenic focus on the heart, which is a marker for Down Syndrome. It was a source of immense stress and worry for me so I opted to do the NIPT a couple weeks later to know for sure, and it came back negative.

This time I would really like to get NIPT right off the bat to avoid that potential scare scenario again, but it will depend on cost.

pghctwife · October 2016

We are planning to. I am ama this time (I am 36, I missed being ama last time by a month even though an asshole ob shamed me for not wanting hate early screenings because 'wel you seen almost AMA and what would you do if yu have a downs baby' her words not mine)

anyhow. In hte past we never did hte early screenings, mainly for me because I've known so many people who had things flag as a possible issue and then got pushed into high risk categories, with fear looming over hte pregnancy and a lot of interventions. We also were always team Green. This time, after 3 boys, we both very much want a girl and Aden absolutely fin ding out.

This time dh is a little freaked about my being older and since it is a surprise too, he's just more concerned. I'm not particularly concerned for hte testing, but I'm fine doing it since we will find out hte sex early. Flame worthy on my end, yes absolutely, but half the equations wants the testing.

Mashunya425 · October 2016

I am planning to even though I have no history and am not AMA. My office does the Maternit21. My OB said that it would be about $200 if my insurance doesn't cover it. I'm doing it because I'm overly cautious. My sister in law (also low risk) had an abnormality at the 20 week scan (that later disappeared) which indicated a possibility of trisomy, the only thing that kept her sane was that she had her harmony results.

mamaelle27 · October 2016

This test wasn't even offered (at least at my doctor's office, to me) when I had my daughter less than 2 years ago. Now, our doctor uses Maternit21, my husband called them directly and with our insurance they said our max out of pocket would be $250 but someone warned us that there could be issues/added costs if you haven't met your deductible, so I think I need to follow up with my insurance to be sure. I'm planning to do it for the added peace of mind, but in general I feel like the tests are getting out of hand and I get so nervous thinking about all the negatives. My doctor said to go at 11 weeks, and only certain labs do it, and the pamphlet says results in 5 days. It'll be nice to know the sex a little early, but I won't be sharing with anyone besides my husband until we see it on the anatomy scan around 20 weeks.

mamaelle27 · October 2016

Also, I'll still have the NT scan at 12 weeks, regardless.

Thanks for this post, btw. I was so emotional when we discussed this with the doctor and it kind of ruined my appointment and day. My husband put it in good perspective, he said if we can afford to do it, just add it to the list of tests they already do, assume you'll get good results like everything else, and put it out of your head. Which is exactly what I'm doing.

helloaustin123 · October 2016

We did the maternit21 test last pregnancy and will be doing harmony test this pregnancy.

riverrainez · October 2016

What's the advantage of having the NT scan at 12 weeks if you do NIPT testing beforehand? Does it test for other things?

mamaelle27 · October 2016

I'd guess it tests for additional things (I googled it but it's gibberish to me), but I honestly have no idea. It's another opportunity to see the baby, and my dr wants to do it, so that's enough for me.

dlphndoc · October 2016

With my first, the tests weren't offered/available. We just did the NT at 12 weeks. With my second we did MaterniT21, covered by insurance, and the NT. With this one my doctor is recommending Panorama at 10 weeks and NT at 12 weeks.

We are team green, and were previously as well. You can't put a notation in your paperwork so when they send the results you don't find out the sex of the baby.

BellaO21 · October 2016

My Dr. recommended it with our last pregnancy, due to the fact that my younger sister was born with DS. She said the price that they charge you is a heart stopper, but apparently the company they use (she didn't say which) will drop it down to $100 oop if you call them and say that's what the office told you prior to giving consent for the procedure. We ended up having a m/c with that one. DH & I are on the fence on whether or not we want the testing done this go round...Mostly because with my luck the company they use wouldn't drop the price down and I'd be stuck with this huge bill with raging pregnancy hormones, lol.

thatlauragirl · October 2016

***TW***

We became pregnant February of this year with a very much wanted pregnancy. Due to my age (37 at the time), the testing was offered to me and we decided to do it. You just get your blood drawn and they send it off to the lab for testing. The test itself is much more accurate than the NT as it tests the baby's DNA which is in your bloodstream. My OB wanted it done at 10 weeks exactly. A week a half later I received a voicemail and knew it was bad news when it was my OB herself calling me. We were the .5% and the results came back that my son had Trisomy 21. She said the test was over 99.8% accurate but it was still a screen and not an actual diagnostic. So my dh and I decided we wanted to have CVS done to verify the diagnosis before we made any decisions. In the meantime, we had a Disney cruise that had been planned for over a year so we went and gave my son the time of his life. In hindsight, it was nice to have that last bit of time with my baby. Every night I would sit out on the balcony and talk to him and sing and just spend time with him. When we got back home we went in to speak with a genetic counselor and then went in for the CVS. During the u/s we discovered he had already passed away. He was measuring 13w6d and it had just happened. We went ahead with testing after his passing which confirmed the T-21 diagnosis.

Sorry for the book, but I'm here if anybody has any questions about the test and what happens. Needless to say, I'm sitting here in blind terror until we can have the NPT done and confirm this little one is healthy. The chance of a repeat diagnosis is only 1%, but odds don't mean anything once it's happened to you. That said, I'm grateful for the test and the opportunity for an early diagnosis. I can't imagine not finding out until later. 10 weeks gives you enough time to get all the facts and make an informed decision about how to proceed. I'm hoping and praying that every single one of us gets good news this time around.

mrlight · October 2016

@thatlauragirl I'm so sorry you had to experience that, but thank you for sharing.

MotherofDragons · October 2016

@thatlauragirl I'm so sorry for your loss. Thank you for sharing your experience and perspective with us.

Assiram42 · October 2016

@thatlauragirl, thank you for sharing your son with us and your opinion on the test.

Elyse1384 · October 2016

@thatlauragirl I'm sorry for your loss and amazing of you to share your story

email2ash · October 2016

@thatlauragirl I'm so sorry to hear about your son. You have a little angel looking out for rainbow baby!

@mrlight at my appt today the dr said Panorama will negotiate down to $100-$200 for people who do not have coverage for it. We currently have BCBS which is not covered.

rdray30 · October 2016

@thatlauragirl Thank you for sharing your story and I'm so sorry for you loss.

I had Materniti21 with my son and an NT scan/quad blood work. I'm assuming that I will have the same this time.

LilLee11 · October 2016

We will be doing the Maternit21 test and then forego the NT scan. My doctor said you're taking a step backwards if you do an NIPT test and NT isn't necessary.

With that said - my NT scan failed us with our third. We had zero soft or hard markers and I was 1 in 1000. We ended up w a birth diagnosis. It was traumatic to say the least. He is now almost 15 months though and an absolute joy! Its DS awareness month and I've been sharing little nuggets of info over on Instagram if anyone would like to follow.

I am a nervous wreck. The NIPT's are simply screenings, not diagnostic. A part of me thinks we should also do CVS for peace of mind, but I hate the risks. We wouldn't terminate a pregnancy, but I couldn't handle another surprise like we had a year ago! This pregnancy alone has been surprise enough to last me the next 8 months haha! I was on the mini pill and got pregnant soooooo....maybe we should buy a lotto ticket since we seem to be the "small chance" in two different scenarios haha!

pghctwife · October 2016

@LilLee11 I've known 2 ppl irl with the same experience! Low risk screening and birth diagnosis.
and this is a mini pill pregnancy here too

MotherofDragons · October 2016

@LilLee11 I can't imagine receiving a birth diagnosis. That is a lot to deal with. I'm so glad you guys were able to navigate that and come to be in a good place. I'd love to follow your Instagram and share in your DS joy.

mirdamae03 · October 2016

@thatlauragirl I'm so sorry for your loss and thank you for sharing your story.
@LilLee11 I would love to follow your instagram if you want to DM me. I can't imagine a birth diagnosis, especially with all of the emotions and craziness of dealing with birth and pp. I'm very much a planner by nature and I think that's why the NIPT would definitely help give me peace of mind and I'd at least feel like I could get somewhat prepared if something raised a flag on the test.

c1tym0m22 · October 2016

My ob does both the NIPT and NT testing for AMA folks like me - while some of it is certainly redundant, the NT scan (combined with the bloodwork) can pick up abnormalities that NIPT isn't testing for (e.g., signs of CMV infection, which the NY Times recently made me realize is something I need to think about). Bring on all of the tests - we're fans of knowing all of the information so we can make a decision (recognizing that we can never know EVERYTHING).

@LilLee11 - you sound like an awesome mama / lady

mamaraffe · October 2016

@LilLee11 I didn't know you were expecting! Congrats!! ((From August bump))

brij2006 · October 2016

Ours makes us sign consent forms if we chose not to do it. Stating that they offered and we declined.

My insurance does not cover it, but said they would this time since I've had so many losses. We did not do it with DD's pregnancy because they did not cover it and it costs $900. So we decided not to do it again this time even though they will cover it.
Our thoughts are that it wouldn't change anything about our decision of what to do with our child, so even though it would be nice to know a bit earlier than the 20 week ultrasound, I'll probably stress less if I find out something is wrong at 20 weeks instead of 12 weeks.

LilLee11 · October 2016

@pghctwife @MotherofDragons @mirdamae01 @c1tym0m22 It was shocking and we definitely grieved, but once the fog lifted we knew everything would be ok. I think seeing my older 2 kids with him is what ultimately helped us. I actually first told my August 2015 group the night that we got results. I felt so lost and I wasnt ready to talk about the diagnosis to IRL friends. That group has been a huge blessing for me!!

The insta is psashleybbutler Its public since Ive been sharing our journey, so I dont mind sharing here.

@AshcicleGAH! I knew I'd be calling myself out if I replied to this thread. ha! Im not ready to announce to the group yet...probably wait until we do genetic testing around 11 weeks. This wasnt planned aaaaaat all. For a couple like us that plan every single thing in our life, Cameron and this pregnancy have been crazy! Remember when my doctor found that cyst? I went in a week later because I felt so awful and wanted to check the cyst. Well, found out I was pregnant...whoa! Im super early, 6 weeks, so this is going to be my longest pregnancy yet

LilLee11 · October 2016

Well how shocked were you?!?! @pghctwife

mamaraffe · October 2016

@LilLee11 well congrats! How exciting!!! This is way better than a cyst

MotherofDragons · October 2016

@LilLee11What a beautiful family!

Assiram42 · October 2016

@LilLee11, you do have a beautiful family. Thanks for sharing. And you're a military family and you wore a bikini 5 weeks post partum...I love you and hate you all at the same time.

LilLee11 · October 2016

Assiram42 said:

@LilLee11, you do have a beautiful family. Thanks for sharing. And you're a military family and you wore a bikini 5 weeks post partum...I love you and hate you all at the same time.

Wtf I had to edit this bc only 1 line of my response posted.

Awe thank you!! Thank goodness for good beach lighting that made me look waaaay better than in reality

Are you guys military? My husband is in the AF and we're supposed to move in June...not really sure how that's going to work, but we will figure it out haha! Just have to focus on getting through this first trimester

Assiram42 · October 2016

LilLee11 said:

Assiram42 said:

@LilLee11, you do have a beautiful family. Thanks for sharing. And you're a military family and you wore a bikini 5 weeks post partum...I love you and hate you all at the same time.

Wtf I had to edit this bc only 1 line of my response posted.

Awe thank you!! Thank goodness for good beach lighting that made me look waaaay better than in reality Are you guys military? My husband is in the AF and we're supposed to move in June...not really sure how that's going to work, but we will figure it out haha! Just have to focus on getting through this first trimester

My H and I are both out now, we were in the Army.

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