NIPT Results and Discussions

kbrown2385

We are getting to that point where people are getting their testing done. Feel free to share results and ask any questions!

biolprof

Great timing because I was just thinking about this. My doc says NIPT isn't covered for me but that sequential testing is. But the sequential is so much less accurate and I don't have risk factors. I wonder what sort of info you can learn and if it made people feel better having the info? We are just trying to gather information and decide whether we want to do it.

marebear15

@biolprof - My doctor offered me testing (no idea if it's covered under my insurance), but I declined because no matter what the diagnosis, we wouldn't terminate. The risk factor would only prove to scare me, and any actual deformities would mostly likely show up on the anatomy scan.

kbrown2385

I’m on the fence of whether or not I want to do it. We did it with ds and found to have no risk of anything. We also did chromosomal testing with our RE and found nothing with either dh or myself. I like having all the info I can get though so that’s why I’m on the fence. I also don’t know what dh wants to do. 

MrsJessS

I’ve been debating doing it. It’s covered by our insurance. The outcome wouldn’t really impact anything for us. But I would like to know the gender early 😬

MollySm

I have been AMA for my last 2 pregnancies, so it was covered and I got it done.  There is no risk factor, which I love.  And having extra info can only be helpful.  So we will do it again this time .  Though with my first appt not until 10w 2d it will have to happen right after that.   I don't like to find out the sex from it though. I did with our middle daughter, and it was just weirdly anticlimactic.  I prefer to wait and see during the a/s. 

biolprof

@marebear15 and @kbrown2385 it won't change anything for us either. DH seemed to be pressuring me to do it since I am a scientist and I like data but I don't like testing for no reason because that and seems wasteful and I don't like data that could be inaccurate. I think if I were to do it I would do NIPT but I don't want to pay out of pocket and even still I don't think I want to because I'm more at peace with what will be will be. But I can see how it might be helpful for others. Also we dont want to know gender so no real big incentive there.

Thanks all for all the input! It's helpful talking to those that have been there or are making the same decisions now to see what the thought process is and how that fits for me! 

Edit: more words

carrieandr

I did it with my daughter and I wish I could do it this time, but I just found out I have a vanishing twin. So bad NIPT results would require an amnio to clarify and I don’t want to risk that.

justsuzie

We will definitely do the testing. A mom in my other birth month group had an issue and watching her go through everything was heartbreaking.  The results would help us make an informed decision.

contemplative01

I did both genetic screener for me with DD and chromosomal testing.  No risk factors but my doctor recommends - I think my doctor likes to have the information as much as she wants her patients informed.  It does not effect our decision whether or not to continue with the pregnancy, but would allow us to have additional resources/specialists available at birth and potentially more prepared for lifestyle changes.  Everything came out fine for DD but that's how we decided to do it first time around.  We will do the chromosomal test this time too.

On a side note DH and I enjoyed finding out the gender so soon, it helped him get serious about names and I was able to surprise him with a little gender reveal moment since I heard the results first.  (We just told everybody else). It was special for us.  This time I'll sign a release so he gets the results and he'll get to figure out how to share it with me.

carrieandr

Like @justsuzie I had a friend who had a daughter with Trisomy 18 that died at 4 months old, after having heart surgery, etc. She opted not to do NIPT, so she found out after the baby was born.

FyreFlyeRush

*stops lurking*

For those who say "I won't terminate"---

I was 35 when I had my son. At the time, (2011-2012) NIPT was brand new and no one covered it. I opted for an amnio because I needed to be sure. I am so glad I did. It was scary, and the wait is HORRIBLE, but it was worth it for me. I wouldn't have terminated my pregnancy unless the prognosis was non compatible with life. However, it allowed me to become as educated as possible in raising a special needs child. In the end, everything was fine, and it brought me peace of mind....and a pirate themed nursery.

*returns to lurking*

marebear15

@FyreFlyeRush - I was under the impression that most abnormalities can be discovered at the anatomy scan as well. If I did end up having a special needs child, would finding out at 20 weeks instead of 10 weeks change much?

FyreFlyeRush

It can only show markers. The only absolute is testing. And, depending on where you live and the abnormalities detected, the difference between 10 and 20 weeks could mean a huge difference.

I'm absolutely not telling anyone to have an amnio, but if your insurance will cover NIPT, don't let "not going to terminate" be your sole reason for not finding out. 

carrieandr

@marebear15 they weren’t able to detect my friend’s daughter’s Trisomy 18 until she was born. Since the NIPT is non-invasive, I feel like it is well worth doing so you have all the information and can make an informed decision.

mercury94

**Dirty Lurker**

When I was pregnant with my son, I did the sequential testing (NT scan) on my doctor’s recommendation. It came back high risk for T13 and T18. So, I did the NIPT at that time (and, after a short fight, it was covered by my insurance due to NT results). That was probably the scariest week of my life, but everything came back normal from the NIPT results. If my insurance covered it, I would do the NIPT again and skip the NT scan, which is far less accurate. 

mammab120

Interesting input from all of you, thank you! Due to AMA and history of loss, my dr really would like to see us do NIPT. I have a resource to call to see how much is covered if any and all that. My SO is all for it, but I feel hesitant.  One more thing for me to worry about. And with 2 bulging discs in my neck, stress causes a great deal of pain, which tylenol doesn't touch. So I'm planning to call and find out about coverage and all, but still not 100% certain we will go forward yet.

Xstatic3333

I’m doing it (NIPT) because I want to be prepared if baby needs any special help after birth. I didn’t with my first, but I was younger then. 

anniemarie887

*lurking from Dec 19*
I will echo about accuracy. NIPT is 1% false positive, NT is 5% per our genetic counselor. I have a friend in real life who had false positive indicator on NT, and we’ve had one in the Dec 19 group. 

@mammab120 if your practice offers Natera Panorama it is $350 for self pay, which is what we did as I am not AMA or high risk. 

justsuzie

I wish I could say results wouldn't matter but I believe in what's best for the baby, not the parents.  If a baby is going to brought into this world with severe abnormalities with no quality of life and a great deal of pain then I wouldn't be able to let that happen.  I love science and am so thankful we have this test as a very accurate resource.  

cweiss04

Since I’m advanced maternal age now I get the NIPT covered by insurance so for sure will be doing it. Have another week to wait and then I’ll go in and get the test done  so hard waiting to find out the gender lol and praying for a healthy baby 

dumbledoredies

I don't plan on doing testing and I didn't with DS. I'm low risk when it comes to all factors and I don't like the idea of being told I have a "1/100th" chance to have a baby with x,y,z. It will give me more anxiety then it will be helpful. The only reason why I've ever even considered it are the reasons that have been mentioned above- being able to be prepared for a child if something is wrong.

With that said, I'm so so happy that they have this testing available for people who want to utilize it! Science is amazing. 

Xstatic3333

For those who are getting the NIPT, when are you getting it? Mine has been scheduled for 12+4, the same day as my NT scan. This seems late to me; I feel like I hear about more people having it during week 10. It shouldn't really matter though, right? It's not like the DNA in my blood is going anywhere? It's the Panorama FWIW.

mama_stef

Mine is scheduled for 12w5d.. I think between 11-13 is good. 

noranorabobora

Mine is scheduled for 12wk 5 days too.

lindseyjane03

marebear15 said:

@FyreFlyeRush - I was under the impression that most abnormalities can be discovered at the anatomy scan as well. If I did end up having a special needs child, would finding out at 20 weeks instead of 10 weeks change much?

This is what my dr said yesterday.  Most abnormalities show up on anatomy scan and then if they find something there, you can always do further testing then.  That's what we had done for our first 3 pregnancies and we're doing that again.  My first three girls had no concerns and were healthy babies.  I AM just a little nervous this time because of that whole advanced maternal age thing.  I'll turn 35 in Oct and have baby in Jan.  I just don't know...

c1kc1kpol1cn1k

Just had mine done today! I will update when we get the results, but for me it was really to just see baby again on the ultrasound

stashattack

It looks like my insurance can cover it if I want it even though I'm only 27. Soooo imma get it. Which is awesome. Hubby really wants it done and I am cool with finding out. It's also flipping us from team green to team I guess we are finding out the sex of our baby LOL. 

mymyheyhey

I need to call tomorrow and see if its covered! I'm planning on it but if it's not covered I'm not sure I'll pay OOP. 

justsuzie

Because I am 39 I get all the tests.  I got the carrier screen and NIPT last pregnancy. This pregnancy I am opting out of the NT scan because it's not as accurate as the cell-free DNA testing.

carrieandr

I asked for an NT scan since NIPT doesn’t work for vanishing twins, but my doctor said they don’t even offer that test anymore and she doesn’t think mfm does it either. Argh.

EmilyE13

@carrieandr I was surprised to hear the same thing! My last pregnancy was in 2017 so it was was odd that practice had apparently changed so much. FWIW, I did have the blood test after a vanishing twin, and got a normal result. 

justsuzie

My practice still offers the NT scan but I honestly don't see the point.  The cost cannot be that much different.  But everything in the medical field revolves around money so it's probably all about the $$$

biolprof

For some strange reason NT is covered for us but not NIPT. Seems like it would be better to do NIPT since it probably cost the same and is more accurate. But I do think the ultrasound can look for heart defects or something. Can't exactly remember remember what my OB said now.

justsuzie

@bioprof I wonder if they jack up NIPT cost for insurance.  I know the non-insurance rate was under 1000, maybe around 250-500$ if I can remember.

carrieandr

@EmilyE13 that’s nice to hear! My dr did say it was my choice whether to get the NIPT, but she recommended I don’t because a bad result could increase my PGAL anxiety. And she said there’s no point in taking it unless I’d be willing to get an amnio if there’s a bad result. ...but there could be a good result which would be calming. I’ll think on it. 

amb0924

My NP at my OB told me that for twin pregnancies- they don't recommend NIPT because it's hard to decipher which results are for which baby, but I will be getting a NT in a few weeks. Does anyone have a prior or current experience with twins and heard the same? 

kbrown2385

Getting my NIPT draw next Wednesday (July 3rd.) Looking forward to getting it done!  DH is already super excited to know the sex. 

Xstatic3333

My MW wanted to do the NT and NIPT. This seems pretty unusual but I’m just going with it. 

kbrown2385

@Xstatic3333 I got both done with ds so it’s not out of the norm.

carrieandr

@amb0924 yes, that is true for twins. I’m debating it because I have a vanishing twin that stopped growing at 6 weeks. NIPT results wouldn’t be guaranteed, but I wonder if there’s a good chance that the results would be for the surviving twin. I don’t know exactly how that works. I’ll be curious to see if it has disappeared at my 12w2d u/s.