NIPT (non invasive prenatal testing) thoughts/knowledge exchange

laurainoakland · August 2018

Hi there! I just hit 9 weeks and realized that I could technically get one of the non invasive pre natal tests now. As far as I know, the NIPT is the fairly modern pre natal test where the mother has her blood drawn and the lab can narrow down the DNA from the baby and test for genetic disorders, the sex of the baby etc.

It wasn't available when I had my first son, so I am learning about it for the first time. My OB recommends using Materni21, and the website says it works as early as 9 weeks. Wondering if there is an advantage in waiting a week or so to ensure there is enough of the babies DNA floating around in my blood to provide an accurate test, or if I should rush to the lab and get the blood drawn right away. Also, does anyone know how long it takes to get results back from NIPT? I think I will feel quite relieved if everything turns out ok but know I will be stressed while waiting for the result. Also, does anyone have a preference for one of the other NIPT tests? Thanks!

RainNFyre · August 2018

My MFM recommends waiting until 10-11 weeks at the earliest. With DD, there wasn’t enough fetal DNA for accurate results, so I had to have my blood redrawn. I think it took maybe 2 weeks to get the results? We also met with a genetic counselor to discuss risk assessment, what we would or could do with the information, etc. I found the whole experience very helpful. My husband at the time was just overwhelmed by it.

blueberrymomma · August 2018

I opted out of genetic testing the first two pregnancies but I am considering it this time. Both my kids have Abinism(albino) so I know there’s a 25% chances this one will have it too. But I’m not sure the test even cover that, so I’m just going to check with my doctor next week. I don’t need to know because it’s not something extremely serious but I can be more proactive since DD didn’t get diagnosed till age 3
@laurainoakland do you have a reason for testing this time? Not that it matters I was just curious.

irshdancr5500 · August 2018

@laurainoakland That's the one I used for my first pregnancy, I believe it took just under 2 weeks to get the results. That was the only one my OB offered though, so I did no research into various options. I did have a friend that went at 9 weeks and there wasn't enough of the baby's DNA to get a result, so she had to go back in 2 weeks later and get another blood draw done, then wait another week for the results. My OB recommended 10-12 weeks to be sure that doesn't happen. I didn't find the wait stressful, but we also weren't waiting for the sex results (which I know a lot of people are anxious for), we chose not to find out from this test.

professormama · August 2018

I did it with my first, and I’m definitely doing it again this time - as long as it’s affordable or covered by insurance. I like having as much information as possible as far in advance as possible. I want to know the sex of the baby. I want to know our odds for various disorders so that I can research and find appropriate resources, if necessary, and so on.

laurainoakland · August 2018

baya5 thats an interesting question, I honestly didn't consider not doing this test. Its covered by my insurance and since its just a simple blood test, seems very low risk, so I think would be worthwhile if it sets my mind at ease. I'm over 35 this time, and would definitely prefer to know if there was anything wrong. I've heard there is a v small risk of false positive, but it seems like a low risk, so I'm okay with that. Although I am eager to know as much as I can about health related things, I'm planning to not find out the sex, just loved that surprise when my son was born.

mamakat0105 · August 2018

I wish my insurance would cover the test, but I don’t qualify. I think it would be nice to know as much as possible about the baby for planning. If something was wrong, you would have the additional resources available at delivery to give the baby the best care possible. From a medical standpoint, I think it should be an option for all expecting mothers.

**Just edited this because I realized I’m a horrible speller.

mels823 · August 2018

If my insurance will cover, I will be getting the test done. I didn’t with my first two, but since then my nephew has been born with downs, and my husbands cousin’s baby has also been diagnosed with downs, so it just hits so much closer to home now. I need to be prepared and understand what the future may hold. I think this is all a part of why my anxiety is through the roof this pregnancy.

kyashley1227 · August 2018

I had this blood work done with my last pregnancy and will have it done again with this one. My pregnancies are considered high risk and it’s nice to know early on if there were any issues. It’s just a pretty cool plus to know the sex so early on. I will have it done at my second prenatal appointment.

bhoop941 · August 2018

For those have had this done out of pocket, what was the cost? It’s an option but I doubt insurance covers it. I would consider it if it were reasonable!

wearegroot · August 2018

I have to call my insurance and make sure they will cover it, but if they do I’ll be getting it. Knowledge is power. I’m a former special ed teacher along with literally all of my in-laws, so finding out our child has a disability wouldn’t be as devastating for us as it probably would be for others (from my perspective, Downs Syndrome is a mild disability compared to some of my former students). But every parent of a child with a disability has to grieve, and it doesn’t mean you don’t love your child, it’s just something everyone goes through. I’ve met so many parents who haven’t gotten to the “acceptance” stage of grieving and it makes everyone's life more difficult, especially the child’s.

So that’s why I’m in favor of the testing. If it does show something, and you can deal with your emotions in advance as well as doing research in advance. I want my child’s birthday to be as happy occasion as possible, not the day I got bad news.

lyse01 · August 2018

@bhoop941 I don’t remember precisely, but though they charge insurance a boatload, there’s like a $200 self-pay option. Or at least it was that two years ago. Check on the website.

Piccola1988 · August 2018

My doctor had me wait until 10 weeks last time. I did the Quest QNatal, which I hadn't even heard of before, but I'm pretty sure all or most of these tests are the same. I think I had my results back in just over a week.

For those debating, I think you have to know yourself. I am extremely type A, constantly stressed out, and I like to have all of the information before making any decisions. I was/am not AMA or high risk, so it was really nice to have an option that was non-invasive. If something came back looking off, I would have gone for an amnio or CVS. I was a nervous wreck from the day I found out I was pregnant until I got those results at 11 weeks, and it was the most amazing feeling to have that weight lifted and hear that our little guy was most likely going to be just fine. I wasn't any more nervous waiting for the results than I was in the weeks before the blood draw.

I went in for the test without even speaking to my insurance company because I didn't care what it cost, I needed the test for peace of mind - but FYI, it ended up being fully covered (Cigna, if that's useful to anyone).

I will warn you, they take what seems like a lot of blood. If you've been experiencing morning sickness or are squeamish, look away, and make sure you drink lots of water beforehand. I remember getting a little shaky over it, not that it was even close to bad enough to stop me from doing it again.

mrstmoose · August 2018

I guess I'm the odd one out. I'm not AMA but I didn't do this test with DD last time and I probably won't do it this time either, unless RE/OB sees a NEED for it.

chucksmom15 · August 2018

Most doctors only offer one companies test. My doctor does Materniti21 as well. I had it with my first bc I am AMA and insulin resistant. Insurance won’t cover unless you have a risk of something but like someone mentioned above the self pay option is a few hundred dollars. I need the piece of mind for myself and it’s nice to find out if it’s a boy or girl

BarefootContessa · August 2018

This is such a personal decision. I personally believe that knowledge is power, so my two cents is- get the testing. I'll just say this may be a *TW* because it involves the loss of my last pregnancy.

I had a quad screening done with my 6yo DS, and I did the Harmony test with my 3 yo DD. Of course we wanted to make sure the babies were healthy, but how novel was it that you could find out the sex from these tests as well!?

Last year I was pregnant and was told I had to wait until 13 weeks to have the harmony test administered because I was heavier than I was with my daughter, and they wanted to make sure that they got enough DNA from the baby. The first time I had it collected, the results came back with low fetal fractal dna. They recommend I pull again. I did; same result. Unbeknownst to me (and apparently my OBGYN) this is an indicator that something could be amiss. I moved forward with doing just a quad screening (which test for T18, T21, and ... some other things I can't remember) and passed. FFW to my anatomy scan where we found out things were NOT OK. They referred me to a MFM and there I found that my baby had an extreme case of trisomy 13. The MFM shamed my OBGYN for not pushing for more info when they recieved the low fetal fractal DNA result twice. Long story short, I was faced with the hardest decision of my life- to be choose to be induced within four days or be subjected to weekly ultrasounds to confirm when he would finally pass within me and deliver then.

I know that a lot of people choose to not have it done because it won't change anything about what they will do if something is wrong- but after being through this experience, I will have the testing done again in this pregnancy. Having experienced what I've been through, the more you know, the more you can prepare yourself.

Sorry if that was an extreme downer post. These tests are a GOOD thing and are very helpful- beyond just telling expecting parents the sex of the baby.

aqualicious · August 2018

My husband I just decided today that we are going to get this done. I am AMA, it took me almost 6 years to get pregnant, and I am insulin resistant. We just want the peace of mind that everything is ok, and of course I want to know if baby is a boy or a girl.

RainNFyre · August 2018

@BarefootContessa thank you for sharing that important perspective. Everyone makes the best decision for themselves and their families (both the born and unborn). I had low fetal dna the first time I was tested with DD and was fine the second time. She has no major genetic abnormalities (we both are carriers for cystic fibrosis). I had no clue that it could indicate an issue. Something to be on the lookout for this time around.

tumblefluff · September 2018

@BarefootContessa I’m so sorry for the loss of your baby.

**TW**.

DH’s cousin has a daughter with Trisomy 13. During US scans they told Mom she had IUGR but weren’t too worried. When she was born they realized it wasn’t just IUGR so they did blood work to confirm and officially diagnosed her a few days later. At that time they basically told Mom to say goodbye because she wouldn’t make it past the week. I’m happy to say now that she’s in the very rare percentile that has survived past infancy. She’s 3 years old and just started school.

DH’s cousin said she wouldn’t have done anything different but wished she had the genetic testing just so they could have been more prepared.

mels823 · September 2018

Well, just had my blood work done yesterday. Now the super difficult waiting game begins! I’m so worried after two DS diagnoses in the family in the last few years.

shinyobjects · September 2018

@BarefootContessa and @rainnfrye what was your low fetal fractal count? Did the doctors specifically tell you it was too low?

BarefootContessa · September 2018

distractedbyshinyobjects said:

@BarefootContessa and @rainnfrye what was your low fetal fractal count? Did the doctors specifically tell you it was too low?

No. They only told me it was too low to pull any results. This was twice for me.

shinyobjects · September 2018

@BarefootContessa thanks for clarifying. Wishing you all the best for a healthy pregnancy and baby!

sheknows6 · September 2018

I'm having the NIPT done next Friday, and I'm wondering how many vials they'll draw? Can anyone share?

Piccola1988 · September 2018

@sheknows6 I don't remember exactly how many, but I remember thinking it was a lot and getting a little panicky during the blood draw - possibly 5ish or more.

sheknows6 · September 2018

Thanks @Piccola1988 - they took 5 from me today and that was just prenatal labs and thyroid so I hope it's not much more than that! I'm awful at having blood taken.

midwestmommy90 · September 2018

@BarefootContessa Thank you for sharing that difficult experience with us. I agree, knowledge is power and the more you know, the more you can prepare.

I did not have NIPT testing with DD, but my MFM specialist is recommending I do it this time. I just try to look at it as more information.

mels823 · September 2018

They only did 2 vials for me for the qnatal test

chelseay416 · September 2018

So my doc office offers the maternit21 test but I was talking to the np and she said the company charges people with insurance $3000 (my insurance wont cover it) and people without insurance $500. But she made it sound like they have no choice but to run it through insurance and recommended I do some research about paying out of pocket in a different city. But I called some labs today and they all said they need a doctors order. Anyone else run into this? I had a different doc last pregnancy in a different city and it was way easier with them. I want it bc it gave me so much peace of mind but I cant pay $3000

lyse01 · September 2018

@chelseay416 check on maternit21’s website/call them. I’m pretty sure your Doc doesn’t have to submit through insurance like that.

mels823 · September 2018

Qnatal results back today! Did the bloodwork
on Thursday evening in case you’re wondering about timing.

EveryStormX2 · September 2018

Having my blood draw for the panorama test in the morning! Wanted to go today after work, but I was WAY too tired. Very excited to find out the gender and start really planning. My SO and I decided to have the testing because of his “advanced” paternal age (39 when we got pregnant) even though he got completely offended when the doctor called his sperm “geriatric” LOL!

laurainoakland · September 2018

Hi there. I did the blood draw (two very full vials) for Materni21 9 days ago and hadn't heard anything... just called the Dr office to learn that the results came in this morning and are awaiting review from the OB! The receptionist was clearly able to see them, happily said 'nothing looked urgent', which I am hoping is a good thing?!?... And she practically squealed with excitement and said it has results of the sex of the baby! I had asked not to find that out, and told her and she said: Oh I better put a big red flag on this and make sure we don't just post to your portal online! Now I can't remember why I wanted to wait to find out... It feels extremely silly that the receptionist knows whether I am having a boy or a girl, but I don't!

Curious if people have thoughts on finding out the sex of the baby. I never found out for my first baby, and was so happy to learn the sex at the birth, that I thought we wanted the same surprise this time. But I'm sure the birth of the baby will be that utter joy filled moment no matter what!

Now just dying to hear confirmation that the results looked ok re: health of baby. V hard to concentrate on work while awaiting the call from Dr office!

laurainoakland · September 2018

Talked it over with my partner and we decided to just go ahead and find out the sex of the baby. The idea of everyone at the Dr office knowing and us not knowing just felt strange and suddenly silly. So I called the receptionist back to let her know and she asked if I want to know right now. And told me I am having a girl! I just burst into tears of happiness. I think I would have done the same if I was having a boy too, it all just felt more real. Everything looked good re: health things too. So utterly overjoyed now.

kangstadt · September 2018

Just confirmed with my insurance that they cover this. Now to wait for my doctor to order the labs so I can schedule an appointment!

mamabear1010 · September 2018

I just got my test results this morning! I had the test done on Monday and received it Friday morning (today). Everything came back negative and gender as well. Team green so we aren’t looking.

aqualicious · September 2018

I had my blood drawn Saturday, I called my doctor this morning. The only result they had back so far was the sex...we are team blue! I’m shocked, I really thought girl (but that was clearly just wishful thinking). I can’t believe I’m having a boy- this is the first boy born into my dad’s side of my family since my dad in 1946. My mom said I’d be the one to break that streak, guess she was right!

catherineclaire78 · September 2018

I had my blood drawn Monday and got the results today. Everything came back negative (phew!) and we are having a boy! That makes 3 boys and 1 girl, so my daughter and I are officially outnumbered.

katj10 · September 2018

My doctor recommended the Panorama test offered by Natera. She did not recommend getting the blood draw for this earlier than 10 weeks. I'm not AMA so the test wasn't covered by insurance, but I wanted it for piece of mind. I got blood drawn at 11w 2d. We got the results within about 8 days. They actually released them online over the weekend and we found out we are having a girl! What is so relieving about these tests is that they have 99% accuracy and can give you much more precise risk assessment than the NT scan, and it is non-invasive so does not have any risk.

Important tip if NIPT is not covered by your insurance: call the company to ask if the self-pay price can be reduced. Natera sent me an email that said the test wasn't covered by insurance but it I paid immediately online I would get a "discounted" price of $490. Well I had read online that if you call they reduce the price, so I called, and I didn't even have to ask, I just said "I have some questions about the bill" and the rep said I could pay $200 instead!? This seems kind of shady to me, but in any case, be sure you call and don't let them trick you into paying double!

harveyisaboysname · September 2018

I feel like everyone got their results super fast. The longer it’s taking the more I get paranoid. We keep having “what if” discussions. I just need to know everything is ok

sheknows6 · September 2018

@harveyisaboysname when was your blood draw, and do you know if your sample had to be shipped to another lab?

Mine was drawn on a Friday, and I got results the next Friday, but that's because I live in a state with a corresponding lab to process my test- they did also say it can take up to 3 weeks!

Hang tight! I know the waiting is the hardest part

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