Bad news at NT scan (update #3 in comments!)

thunderberry · October 2017

So we had our NT scan and unfortunately it was not the result we were hoping for. They measured the Nuchal Translucency at 3.5mm and anything over 3.0 is considered abnormal. That combined with my hormone levels placed my down's risk at 1/28. But what really freaked me out is the doctor said that babies with measurements of that level will have some sort of health issue around 50% of the time, whether genetic or something structural like a heart defect etc. There's this whole crazy list of things it can be caused by. Or... it could just be our baby has a big neck. Flip a coin basically.

We are freaking out and basically have been crying since we got the news yesterday.

I was wondering if anyone else has had an elevated NT measurement and how that worked out for you? We are also potentially going for a CVS test on Monday. Has anyone else undergone that? Anyone know any positive or horror stories?

Julesby · October 2017

I am so sorry. I have no experience with unsettling NT results, but did have a scare at our anatomy scan. Our daughter had a cyst on her brain that resolved itself before birth. There were a few other issues that resolved themselves as well.

I hope you receive more conclusive and reassuring news soon.

cups4 · October 2017

I'm so sorry you are in limbo right now. I'm thinking of you and your family and wish I had something better to say.

justsuzie · October 2017

This is terrible news and I'm sorry this is happening to you. I hope you are one of the many moms where the NT scan proved to be wrong. Thinking of you.

bwow615 · October 2017

@thunderberry I'm thinking of you and your family right now. Try not to think the worst. I know you have a lot on your plate right now so just take time to breathe, easier said than done. Sending you all good vibes and will be hoping for the best for you and your baby.

suchaglencoco · October 2017

I have no experience, but I am sorry you guys are going through this.
Please keep us posted and vent to us as needed. You'll be in our thoughts.

Ceridwen77 · October 2017

I’m so sorry about your results. I have no experience with a CVS but considered one if we received abnormal results. I have done a lot of research and also discussed the procedure with a genetic counselor at the MFM hospital. They are extremely safe and low risk and may give you the peace of mind you need. Good luck to you whatever you decide.

mileswithmyles · October 2017

I’m so sorry. I don’t have any experience, but you’re in my thoughts.

nanifrog · October 2017

I'm so sorry. Definitely do the cvs. Amnio is conclusive, but you have to wait longer. I hope you have a lot of support right now. Please keep us updated. Hoping for good news from you.

bearwithme · October 2017

I have no advice about this, we didn't find out about my sons condition until after birth. But I do know how stressful the "waiting" period can be. I just wanted to send you so many hugs. Ill keep everything crossed for a healthy baby.

MLD912 · October 2017

I’m so sorry. I have no experience but I’ll be sending positive thoughts.

lincbeesmom · October 2017

I’m so sorry you’re going through this.

MissusTexas · October 2017

Sending positive thoughts your way. I hope it’s nothing.

tincupchalice · October 2017

Hopefully it's nothing. I know waiting is so hard and it's hard not to spiral.

sbaby2019 · October 2017

That would be so tough, I'm sorry. Sending you positive thoughts! FX for good news with the CVS

firefliesandfjords · October 2017

I did not have an NT scan in my previous pregnancies, but with my first, my quad screen came back 1 in 12 for Down Syndrome. We did the MaterniT21 test after receiving that news and were relieved with the good results. Although she was born prematurely, my daughter is healthy and doing very well. I know how scary and stressful all the waiting in between can be, and I'm so sorry that you are experiencing it. My thoughts and prayers are with you and yours as you prepare for your next steps.

Saratiff · October 2017

Praying for you and hopefully it's nothing

glitzandglitter · October 2017

I do not have any experience or stories to give but I wanted you to know you will be in my thoughts and prayers.

nikky8 · October 2017

I don't have any experience with this, but I am so sorry you are going through this. Hopefully it is nothing, sending positive thoughts your way.

JNCPro3130 · October 2017

Sending all the hugs and prayers for you and your baby! Please keep us posted!

createmagic14 · October 2017

I'm so sorry you are dealing with this! Sending lots of love and hugs for you guys!

rachelg777 · October 2017

Thinking of you guys and praying for strength for you all as you go through this rough time and go for more testing!

sandbar517 · October 2017

So sorry you had worrisome results. Waiting is not easy. Thinking of your and your family, and keeping my fingers crossed for a good update.

thunderberry · October 2017

Thanks everyone.

silverhope · October 2017

Just wanted to share this thread I found (I did not read the full thread, but the OP shares a hopeful experience): https://community.babycenter.com/post/a28737221/my_experience_with_the_nuchal_translucency_ultrasound

Thinking of you

theletlers · October 2017

I can't imagine how hard the waiting is. And while I haven't had a child with Downs, I work with individuals with disabilities including many with Downs. So even though it's a possibility remember it's not a death sentence. Life will be a little different than other people's who aren't as personally affected by a disability, but it doesn't always mean bad. Dont stress too much until you have more answers. But know you have support no matter what and that we are all sending positive thoughts and lots of love to your family. The waiting is I'm sure very difficult. (I don't mean this in a bad way, I really hope all is well and baby is healthy first and foremost!! ❤️

Cerisrichard · October 2017

So sorry to hear this, it must be extremely worrying! I don't have any experience, but will be thinking of you and your family!

kimmy9876 · October 2017

I'm so sorry . The waiting and the worrying is the worst. I will keep y'all in my thoughts

Jlr025 · October 2017

@thunderberry I'm so sorry! I'm going through something similar. Our NT scan was normal, but my blood work put me at a 1 in 67 chance. For me its a low PAPP-A level (.25). I had the blood work for the Harmony test done on Friday and the waiting is so hard. I've been a mess since getting the phone call. They said I should have the results back this Friday. Just wanted to send hugs and if you want to talk feel free to pm me. I know the NT testing isn't the most accurate so I will keep my fingerscrossed for both of us!

maplemom18 · October 2017

My sister-in-law had a false positive on her NT scan a few years ago and her baby girl was just fine. I know the waiting was really hard though. With my first baby, I found out that I was a cystic fibrosis carrier, so my husband had to get tested. Luckily he is not a carrier, but if he was, our odds would have been 1 in 4 to have a CF baby. Super scary and those 2 weeks while I waited for the test results were some of the worst of my life. Thinking of you and hoping you get good news tomorrow!

SLC1102 · October 2017

I'm so sorry you're going through this. Sending lots of positive thoughts your way.

RachelT1234 · October 2017

Sending positive thoughts

MrsPrice519 · October 2017

Sending positive vibes. I hope your cvs helps answer some questions for you. Im sure this is very scary, but we are here for you ❤️

okaykoala · October 2017

FTM here, so no experience with tests of any kind yet, but I will for sure be keeping you and your family in my thoughts. Fingers crossed for conclusive results soon. Take care of yourself, and keep us posted.

doraleigh35 · October 2017

Sending you positive thoughts! I hope you can get some answers soon. I’m sorry that you’re going through this.

labgrand2012 · October 2017

I am so sorry you are going through this! My first pregnancy had a very high neck measurement, I want to say close to 6 mm. At that time we tried to do the CVS, but there was no good access to the placenta, so we did the Maternity21 blood test. That came back positive for T13, and because they told us there was still a chance that could be wrong (we asked if there could be), we did do the CVS (through the abdominal) to be 100% sure. The CVS did confirm that it was T13, but we were so glad to be 100% sure what it was. The waiting was the hardest part, I think all this took over 3 1/2 weeks to get done because we couldn't get the CVS the first time. I will say, the CVS is not comfortable at all. While they numb your top section of skin, once they get further down there is no numbing there. It felt like killer cramps as soon as they hit the uterus, but the test does not take that long. It just depends how quickly they get to the placenta. Please let me know if you have any other questions, and I will be thinking of you!

thunderberry · October 2017

Hey everyone, it's update time.

Thanks again to everyone for your support and thoughts. We met with the genetic counselor and genetic doctor today and it was really really helpful. From what we've been able to research ourselves, and from what the doctors said today it does seem that estimate of 50% was overstated. They think it is more likely than not there is nothing wrong, and the risk might be more like around 20% or even lower with some of those issues being mild or commonly corrected with surgery. However there's no denying I'm at a much higher risk than the average person to serious issues so we can't just let it go.

We did more research on CVS and decided not to undergo the procedure. While it seems overall pretty safe, they aren't commonly done at our hospital (maybe 1 or 2 a week) and that is a risk factor for higher levels of adverse events. I also have a tilted uterus which is also associated with higher miscarriage rates for transcervical CVS. They do transabdominal even more rarely at our hospital and didn't even seem to see it as an option, so overall, it just feels like too big a risk for us. Trading off worrying about genetic issues for worrying about a miscarriage doesn't feel like a good deal!

Instead we have gone today to get the bloodwork done for MaterniT21 Plus. It will set us back about a grand since they don't cover it here, but will be well worth it if it can give us some peace of mind without the risk to our baby. We should get those results Friday or Monday. We've also been offered another follow up ultrasound around 15 or 16 weeks to look for heart issues etc, and may still undergo an amnio at that point since they seem quite a bit safer than a CVS and are done routinely at our hospital.

So we definitely aren't out of the wood yet but I am at least in a little bit less of a sheer panic. We have hope that everything will work out okay. Especially since DH is enormous and has a neck so thick he can never shut his shirts, so a thick neck on our baby would not exactly be unheard of :P. Friday can't get here soon enough though!

silverhope · October 2017

@thunderberry I'm glad the genetic counselor was able to give you some more information and let you know that the 50% was an overstatement. It sounds like you and your husband really did your research and are making the right decisions for your family. I hope you get good results back on Friday/Monday. Thinking of you!

cups4 · October 2017

Thinking of you and hoping for even better news for you soon @thunderberry !

nikky8 · October 2017

@thunderberry so glad to hear that the 50% was overstated, what a relief. You have to do what you feel is right as far as further testing, following your gut is sometimes the way to go. I will continue to send positive thoughts and can't wait to hear more good news!!

holli0801 · October 2017

@thunderberry I can't believe it wouldn't be covered considering there are risk factors! Sorry for all the stress and now extra financial burden. FX all is well!

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