Nt measurement 3.8mm - please help :(

[Natalierosex]

I’m 29 and have suffered from recurrent miscarriages .

im currently 12 weeks and 1 day pregnant and went for my scan yesterday.
scan showed a growing baby with all clear signs except the nt measurement was 3.8mm.
we were then taken into a room with a doctor from the fmu who’s explained to us this result with bloods (we’re currently waiting on ) would more than likely show as high risk .
im absolutely devastated .
she explained the nipt test and the intrusive tests and my head has completely fell off.
after so long trying for a baby I thought yesterday was going to be an amazing experience and now I’m left so deflated .
hoping some of you have some positive stories to share with me with a similar measurement

I don’t have any directly similar experience but we had a difficult scan for different reasons a few years ago and I found these people amazing to talk it through with:
https://www.arc-uk.org/
They were knowledgeable and kind (I cried through much of the chat) and I always recommend them on this sort of thread.
Hopefully someone with more direct experience will also come along soon.

@Natalierosex so sorry you’re in this position, it’s such a shock. This was me at my 12 week scan a couple of months ago - NT was 4mm, I was devastated. Bloods came back 1 in 2 chance of down
syndrome. I felt like it was a done deal, we were going abroad the next day so paid for a private extended NIPT (panorama) as we didn’t want to wait 2 weeks to even have another test. To my shock and surprise, the NIPT came back low chance (less than 1 in 10,000 chance for Downs, Edwards, Pataus, Turners and a load of other things it screens for were low risk too). It’s not diagnostic and can be wrong, of course, but We’ve since had two robust anomaly scans with foetal medicine and an in-depth echocardiogram scan with a cardiologist - all were normal, fluid had resolved and no “soft markers” for any chromosomal disorder at the present time, heart looks good.
I was offered invasive testing but haven’t opted for it so far due to the risk of miscarriage and all else looking good - however I will say that I wish I’d had it now, I’m 22 weeks and they prefer not to do it at this point in the pregnancy and I wish I had more certainty about the more rare stuff it looks at.
obviously I haven’t had my baby yet so I can’t say how it’s all turned out but just wanted to let you know you’re not alone, it’s just been the worst time, I really feel for anyone going through it.
i would say prepare for a high chance result from screening but by no means does this make it a done deal. Thinking of you x

My friend had a 1 in 21 risk of down's she was in her 20s. She had CVS which came back as baby is healthy. baby was born everything healthy. it was scary for her having the test but its worth knowing so you can be prepared either way and make an informed decision.

@Bloodystressed1 thank you so much for sharing ur story ! It honestly is terrifying, I’m devastated and trying to put on a brave face infront of my 4 year old who is so excited about this pregnancy which makes it even harder.
My husband is keen to do the cvs testing but I’m absolutely terrified about the procedure and pain.
Are you in the UK?
1 in 2 - 1 in 10,000 is such a massive difference

@kakacacao aw I’m glad everything turned out ok for ur friend !

Hi there, so sorry to hear this. It's such a stressful time, I had the same and sadly it wasn't good news (but NT was a bit higher) - but I'm writing to say definitely get the CVS so you know for sure. Low risk NIPT results are reliable but high risk ones you will need the CVS/amino anyway to confirm.

The miscarriage rates reported for the invasive procedures are outdated so don't let that put you off. My hospital said they had never had a miscarriage from the procedure.

So sorry and really hope everything turns out ok for you xx

I’m so sorry to hear that. We had a 3.9mm measurement, followed by a CVS. DD is now 9 and is completely healthy - we are on holiday and she has spent the day cycling for miles and swimming lengths because she wants to be on the school swim team this year. UCLH were brilliant and brought us back in for a CVS the day after our first scan, but I will never forget the night in between the two. Sending you lots of strength for the next few days.

Im sorry you're going through this.
I really can't recommend highly enough that you speak to ARC as advised above. When I needed them, they were very good to chat through everything with and are also very good at being realistic about what it may mean - and that includes if its most likely a positive outcome.
I hope everything all goes well for you

Totally get how your feeling my nt was 2.7mm but my bloods were low too
But the 2.7mm is high scoring on my test paper even though they say its in the normal range So I don't understand theses tests.ive ended up with 1 in 3 risk down syndrome and 1 in 38 edwards I can't stop crying, feel like I've separated myself from my baby Ive deleted all baby apps
I went for cvs last week and they couldn't do it cos of placenta so I've spent my week crying and sleeping to try and forget
I'm booked again for cvs tomorrow and praying they can do it because as much as I'm terrified it's bad news I just feel like I need a definite answer cos I'm torturing myself on Google
I rang arc yesterday cos I needed to talk to someone who understood and I did find it helped a bit
Thinking of you x

@Natalierosex yep I’m in the U.K. I’m 38 so that pushed my chance up, plus my bloods were a bit off - your chance may not be as high as mine. My Papp-A was a bit low (0.5) and my hcg was slightly over average I believe but the midwife said the main thing would be the Nt measurement making it so high chance. Your bloods may well bring the chance down.

I agree with the comment to go straight to cvs if you can, although of course the invasive testing is a very personal choice. We only went for nipt initially because we were going away and were panicking About having to wait 2/3 weeks to see anybody without any answers at all.
I think on reflection a cvs would have been better as it’s definitive and looks for more stuff, and you find out earlier. When the nipt came back low chance we felt reassured for a period of time and when I was offered amnio (16 weeks), I didn’t feel comfortable with the associated risks, however small, given that the nipt was low risk and the scan looked totally fine. i have a history of miscarriage and I think this affected my willingness to take that risk in my case, although I wish I had done it now as the reassurance from the initial negative nipt has now worn off and I am worrying about more rare stuff that can’t be seen on a scan (not sure what conditions match that description though!) . Totally personal choice though and you may or may not want to go down that road. We decided to wait and see what the heart and 20 week scans showed before making a decision on amnio - if there had been any doubts at all, we had agreed to do it, but as both scans were perfect we decided not to.

I had NIPT with my son 3 years ago as his chance was 1 in 29 - came back negative and was correct, he didn’t have it. I think a negative is supposed to be pretty reliable but a positive is slightly less reliable.

I really feel for you, it’s not how anyone wants their pregnancy to go and just feels so unfair after what you’ve been through already - I feel the same, having had a similar journey. But I will say the waiting has been the worst bit, the quicker you can get an answer the better.
ARC are really good, I second the comment to contact them.

I'm sorry you are going through this OP. I was older than you and it was my 1st pregnancy after 4yr TTC, so paid for the NIPT at 11 weeks. It showed patau syndrome. For context, my NT was 6.5mm and there were obvious things wrong on the scan- and it was confirmed as patau from the autopsy.

NIPT is just a regular blood test on yourself to check for foetal DNA. If this is an option, I'd have that- and then IF the results are also high, you still have the option of the CVS/Amnio if wanted.

I too was going to recommend ARC. Just remember that whatever the outcome, this isn't your fault and you aren't alone. Happy to answer any questions you have x