NT/NIPT Dicussion Thread

srscott3

I’m hoping it’s okay to start this already!

Some of the early June due dates will start having the NT and/or NIPT scans/draws in the next few weeks. Use this thread to ask any and all questions you have about the tests (insurance, costs, what to expect, etc.)

STMs+ Share the knowledge!



Here’s a quick chart to help answer any preliminary questions. 

TJtheGoat

@srscott3 thank you for the chart! I can’t think of any questions right now, but it’s helpful to see them contrasted like this. 

wiseh

My gyno recommended doing NT, if it shows high risk do NIPT and then if that shows high risk amniosynthesis. In Australia it’s ~$200USD for the NT and ~$600USD for the NIPT. 

sparklingdiamond

I was surprised during my last pregnancy to find that several OBs in my area didn't even do the NT scan anymore .

amaren-2

I did the NT scan with my first pregnancy. I don't think I will do it with this one. It isn't going to change my mind about the baby and it caused a bit of unneccesary stress during DS pregnancy. 

I don't know, when I go in for my next appointment I may talk myself into it.

ShadeofGreen816

I don't think that my OB offers the NT anymore. They do offer NIPT, but I don't think I'm going to do it. Its expensive since we haven't met our deductible for the year (and wont this year). Also there's the matter of what I'd do with the information. *TW?* I don't see myself terminating a pregnancy for a chromosomal abnormality, and I honestly don't want to have to make that decision. *End TW* If there's something happening, you can usually see it on the anatomy scan, so we'd have time to prepare any necessary medical interventions if something is wrong with baby. 

KissMeImScottish

@ShadeofGreen816 and @amaren-2 , that was pretty much exactly why we opted out for my oldest. I don’t regret it at all - it made for a more peaceful first half of pregnancy.

Just to offer an alternative perspective, though (and again, totally respect where you’re coming from, it definitely is something that may cause more stress without much benefit for any number of people, myself included the first time around), but I did have it done with the twins. Higher risk pregnancy meant it was better to have an idea what we were dealing with - benefits outweighed the stress. My results came back at less than 1 in 10,000 for there being anything wrong, which is about as good as it gets. I ended up being really glad we did do it, though, because at the anatomy scan they found a cyst on my daughter’s brain. In many cases, this kind of finding is benign (basically, a pocket of fluid was pinched off when her spinal column closed), but

*TW* it can also be indicative of Trisomy 18, which would have been doubly complicated to deal with with the twin pregnancy. *END TW*

Because we had the low risk results to pair with the anatomy scan, we were able to effectively avoid more invasive and potentially riskier testing like amnio. Because of that experience, we’ll probably go that route again.

As a side note and heads up to any twin moms here (I think there were a couple), just in case you’re not super familiar with the testing, the sex determination isn’t super helpful when there’s more than one unless you know they’re identical or if you’re carrying two girls. It looks for the presence of a Y chromosome, but all it will tell you is that there IS or IS NOT a Y chromosome, which will just tell you you have at least one boy in there. Not really important, just more information for anyone who was curious.

ruby696

We did NIPT for my last pregnancy and will again this time. I'm over 35, so insurance covers it. Also, while the results won't change my mind, I would like to be as prepared as possible. I'd also like my doctor to be as prepared as possible if baby will need any special/emergency care or treatment at birth.

whitney812

We didn’t do testing with our first bc my mindset was we weren’t going to terminate the pregnancy regardless of results. If I could re do I would have totally gotten testing done just to be prepared. I spent the last ten weeks of my pregnancy basically just hormonal and worrying that we wouldn’t be prepared if our baby was born with a condition that needed special attention. 

marijaa333

I think the NIPT is a fantastic option, and I am sure it has gotten more and more reliable with each year since it was first introduced. However, due to AMA, I am going straight to CVS, which is also what I did with #1. I was 36 then, and now 40, so I want a diagnostic test versus a screen. CVS does increase the risk of miscarriage by a very small amount (less than one in 200 at reputable centers), greater if you have a "hard to reach" placenta or an inexperienced doctor.  The doctor should also prescribe antibiotics for a few days to reduce the risk of infection. I fully trust the doctor but if I didn't, i would think much longer and harder about it and possibly opt for the NIPT.

ruby696

@marijaa333 Is CVS as uncomfortable as it seems? I'm 37 and considering it, but it seems like it would be a really horrible experience. 

sparklingdiamond

The chromosome issue my daughter had was not one that would be picked up on either of these tests.  It was picked up through an amnio.  So I'm also scared because I don't know that either of these tests would give me piece of mind but I don't want to go through another amnio.

ShadeofGreen816

@KissMeImScottish Totally get and agree with your position. I didn't want my perspective to come off as "don't do the test." It has a lot of benefits. If it were covered at a reasonable cost, I'd probably consider it. But I'm neutral in general *for us* and then the $500+ price tag just kind of tips me towards "no." We do have different insurance this time around, so I suppose I could call and ask. I'm on my husbands insurance and I haven't heard about enrollment for next year to find out if they're going to be on the same plan or a different plan, so I haven't really messed with insurance at all yet.

emeraldcity603

I'm opting out of these tests. *TW* I won't terminate even if my baby has something that keeps them from being able to live for very long once he/she is born. I would cherish every single moment even though it would be unbearable emotionally. I don't judge others who make a different decision though. Everyone has to do what is best for them when faced with a situation like that. *TW*

I feel that if anything were to come up at the anatomy scan, I would still have plenty of time to prepare. 

srscott3

I don’t know how to say this in a way that will not be taken the wrong way..so please remember this is over text and I mean absolutely no disrespect. 

But for those who are saying they’re not getting the testing done because they wouldn’t terminate anyway..do you think the people who do choose testing are only people willing to terminate? Because we’re doing the NIPT but that doesn’t mean I would terminate if something shows up. These are just screenings and results should only be used to decide whether to proceed with a diagnostic option, not jump straight to termination. 

Of course, no one needs a good reason to not do it if you don’t want to. I guess I’m just confused why “terminating is not an option” seems to be the most popular reason for not testing. 

Edited to clarify: I wouldn’t terminate at all, even with a firm diagnosis from amnio or CVS. I just like having the info

srscott3

Oh, and if anyone’s interested, my clinic does the Harmony Test. I called my insurance who said they won’t cover it. So then I called harmony and they said that there is a “non-insurance rate” where they don’t even bill the insurance, just the patient directly. I was told it’s a max $199 out of pocket. 

emeraldcity603

@srscott3, I don't assume anything as far as what others are choosing to do. I know some do it for peace of mind and to be prepared. I also know some terminate at the mention of any abnormality. 

I simply choose not to and I gave my reason why. I certainly didn't post that to make any judgement on those who choose differently than me. I even stated that in my comment. 

In DS2's BMB, termination was discussed a lot when talking about this test. So I know it is common. <--most likely why my brain goes there when this topic comes up. 

srscott3

@emeraldcity603 That makes total sense. Thank you for the clarification. I’m sorry your last BMB had a lot of termination talk  

luckystar28

@srscott3 I’m also having Harmony done. Next Monday in fact! 😬 

srscott3

@luckystar28 ahh!! So soon! FX for low risk!

emeraldcity603

@srscott3, yes it was strange that there was so much talk about it. I think we had one mom go that route. She never updated us on whether she did the amnio either. She just stopped posting. 

luckystar28

@srscott3 Thank you so much 🤞🏻

We are also having the state genetic testing done. I’m not sure if that’s what NT is considered under. Anyway, last time around it’s the test that showed abnormal analites (spelling?) that presented a possible increased risk for preeclampsia/preterm labor. That blood draw is next Thursday. My MFM says that even if I have abnormal or normal numbers, it won’t change my monitoring or treatment this pregnancy, but it will be good information to know. There isn’t a strong enough correlation between preeclampsia and the analites in the general population right now, but for me it was oh so true. We shall see.. 

meatballs37

We are hoping to do the NIPT. I need to start calling insurance and figuring that out next week to see what it will cost us out of pocket. I am hoping it will be mostly covered given our history of loss. 

*TW*
For us personally, I do not want to wait until the anatomy scan (20 w) again to get bad news. That’s when we found out our one twin Abe had a pelvic kidney, echogenic bowel, and the beginnings of heart failure. Our other twin was completely normal even though they were identical. We ended up having an amino done off of the fluid they took from Abe during the placenta surgery at 21 weeks. It came back normal. But I think it would have been helpful going into all of it knowing the risks were low even though we would never terminate the pregnancy. In fact we did everything to save them and they both still died. My heart can’t take another late term loss without being prepared. It’s fucking hard. 

Not trying to sway anyone. But would you really want to find out when you give birth that your baby you have prepared for the last 9 months has a disease not compatible with life and won’t come home? 

Coming home to their empty nursery all ready for them was awful. We had to move because I couldn’t handle it. 

chrssyms

@luckystar28 I think that we are going to do the Harmony as well. It would be next Thursday if we do it!

ruby696

@meatballs37 Thank you for sharing your story. Personally, I have a lot of opinions about how I think I would feel or what I think I would do in certain situations, but really, I have no idea. I think your perspective and experience are valuable to those of us who are lucky enough to be in the dark. 

sparklingdiamond

@meatballs37 I totally understand where you are coming from but I kind of feel opposite based on my experience.

TW***Loss

We found out our daughter had CDH at the 13 week NT scan.  This was scary by itself because it is quoted to have a 50% survival rate.  We found a specialist in FL and had a plan.  The specialist highly recommended we get an amnio because of some things they were seeing.  This is when we found out about the Mosaic trisomy 15.  We found out way earlier than most about the CDH.  I desperately wished I could have not found out until the anatomy scan sometimes and just had 5-6 more weeks of a stress free pregnancy.  I was angry all those happy moments got taken from me and from that moment until we ultimately lost her at 32 weeks, I was full of anxiety and sadness. 

ruby696

@sparklingdiamond I'm so sorry. 

meatballs37

@sparklingdiamond

hugs to you mama. There is something so hellish about a late term loss no matter which way you slice it I suppose. I totally get your perspective too. 

I just wish for us, that we had never gotten far enough to plan their nursery. And for the three weeks I was pregnant with my one son who was dead and one still alive, it did give us some closure to start preparing for the funeral rather than a happy homecoming. 

sparklingdiamond

@meatballs37 Hugs to you too.  Life hasn't really been fair to either of us.  I guess I will say we chose to not do a nursery yet so I hadnt gone that far.  Probably because we did lnow the diagnosis early.  I can see benefit to knowing early and benefit to not knowing.  I know neither of us will be able to relax really.  I'm here if you ever need to talk because we both experienced something pretty traumatic .<3

emeraldcity603

@ meatballs37 and @sparklingdiamond, I truly can't imagine the heartbreak you both have suffered. My heart goes out to you both. 

Edit: to fix tag. 

meatballs37

@sparklingdiamond same to you friend. I admire your strength in you have had in all your decisions. I’m also here any time you want to chat. 

harrierwife

Ladies, thank you for the honest, respectful, and informative posts in here. And hugs to you all.

As a possible FTM, all of this is brand new to me. I'm only now starting to do some research on the various tests and procedures and trying to form my own thoughts and opinions on them. This thread was a very helpful starting point. 

As of right now, I don't think I will be doing either test. I'm prone to high(erish) blood pressure and anxiety and think that personally, the tests might be triggering. I've been working hard the last few years to "surrender" the present and future rather than trying to control it, and am now trying to bring that mindset into this pregnancy. As others have stated, the results of the test will not change my mind about whether or not I will proceed with the pregnancy, so why worry before its necessary?

For the record, I do not think that anyone choosing to do the testing is wrong, misguided, silly, etc. Everyone should make choices in their own best interests, and I hope that you all do!

Granted, MH and I are young without a history of loss, complications, etc. We also have very supportive families that will jump in at a moment's notice if we need assistance. We also have access to good medical care, but the care does not cover the costs for the testing. More context on our decision, I suppose. 

bakerstreetboys

Hugs to those moms who didn’t get to bring home their babies. 
We will be doing the testing, either Harmony or Panorama, depending on the lab. I like to have as much information as possible, good or bad. We paid OOP last time, but provincial insurance will cover it this time because I’m AMA. 
We had it done with DS and were happy to have those results come back as normal when there were soft markers on his NT scan. We had a fetal cardio ultrasound done which saved us from more stress and from an amnio. 

meatballs37

@bakerstreetboys you make a good point that maybe also others haven’t thought of. 

At the anatomy scan or NT, it isn’t uncommon to find “soft markers.” But having already had the NIPT done could save you from doing an amino if it came back as low risk. 

As I mentioned above, our DS had soft markers (echgenic bowel and a pelvic kidney). His amino came back completely normal. I sort of wish we would have had the blood work done in the first place saving us the cost and worry of the amino. Just another food for thought for those on the fence. Because everyone will have an anatomy scan. 

catmommac

With my first pregnancy, we did the Panorama test because I have a cousin with spinal bifida so we wanted to be aware of any possible issues as soon as possible to give us as much time as needed to deal with them. Thankful there were no issues. This time around we also plan to do the Panorama for the same reasons.

ShadeofGreen816

@srscott3 I hope that my post wasn't offensive. That's certainly not how I intended it. I think this is such a personal decision. For me, those were the thoughts. Preparation, knowledge, cost. For me, the positives didn't outweigh the negatives. *TW* I would NEVER think that just because someone does the test, they're considering termination. *END TW* Just that would be a factor in my decision making process. Perhaps its a privileged standpoint having had only 1 healthy baby before. There's always an element of worry, and working in healthcare I know too much and so not enough, and the possibilities would make me very anxious. 

@meatballs37 @sparklingdiamond and I know several others, I cannot imagine the hardships you have endured. My heart breaks for you every time I read your stories. Thank you for sharing them here. 

SpongeWorthy

Lurking on my friend @KissMeImScottish

I opted out of the NT scan with my first pregnancy because like a lot of you, it wouldn’t have changed my decision on continuing with the pregnancy.  Well, the anatomy scan was quite a shock when it was discovered that my baby was not healthy and most likely had a genetic disorder.  If I could go back and do it again, I would have done testing earlier.  It’s not that it would have changed my decision to terminate, but rather that it would have bumped up my level of care earlier.  I wouldn’t have had to scramble as much to get a second opinion.  I would have had an anatomy scan earlier.  Maybe they would have caught my son’s heart disease earlier and I would have gone to a more highly ranked hospital or maybe they could have done a fetal intervention to prevent his heart disease from progressing.

TL;DR: I opted out early genetic testing with my first, and I regret it.

ETA: It’s a very personal decision, and there’s nothing wrong with opting out of testing.  But don’t look at it as only benefitting you if you would consider termination.  That’s not the only reason to do it.

Dcwtada

❤️ @SpongeWorthy

TJtheGoat

@SpongeWorthy thank you for sharing that. I hadn’t actually considered that it could affect the level of care your doctor provides. That’s very helpful. I’m sorry that you had to go through that with your son. 

marijaa333

@ruby696 mine was no more uncomfortable than a pap smear. If the placenta is not easy to reach, then they may have to go through the abdomen, like with an amnio. That scares even me and I'm not generally afraid of standard medical procedures.

@meatballs37 and @sparklingdiamond i am so sorry for the horrific experiences you've endured. Big hugs to you both.

KissMeImScottish

@spongeworthy, all the love, my friend. I was just thinking the other day about that article you posted a while back about the in-utero surgery that allowed parents to go from thinking they wouldn’t bring their baby home to having him born with almost no complications, because of early intervention. Not sure what brought it to mind, but you and your sweet baby are never far from my thoughts.