NT of 4.1-4.6 and panicking

[Tig2010]

Hello!

I had my 12 week nuchal scan today (at 11.5w), having had a low risk Harmony result a few days ago. The sonographer took ages to find the right angle for the NT measurement and ended up taking three - 3.6, 4.1 and 4.6. She gave us a result of 4.1 NT as it was the average (although I’ve since read that she should have stuck with the highest result?!!).

She told us that the result puts us in the high risk category for chromosomal abnormalities, congenital heart problems etc, but beyond that we didn’t get any info about the next steps or risks of these abnormalities. We told her about the NIPT test and she did say that was good but I appreciate that it only tested for Down’s, Edward’s and Patau so there may still be other chromosomal issues.

We are booked to see a doctor for another scan on Monday and the sonographer said he wil check the heart on the scan and then ‘discuss options’. I have such a horrible feeling about it all and even though I know it’s really stupid I have been googling incessantly since we got home. It feels like for every positive story we find lots of not so positive ones and there is conflicting medical advice on risks when you are around the 4.1/4.6 mm mark. I’m also really worried that as I’m only 11.5 weeks the NT number will be even higher when we go back on Monday.

We got here via IVF so am feeling quite tired from that, sick of anxiety and struggling to feel positive. Sorry to be so negative! Any info about the next steps/stories from anyone who’s had a similar experience (even if not positive) would be so much appreciated!

Thank you xxx

@weivfgotthis I mean the first set of CVS results

@Tig2010
I've since spoken to the company and they explained the NIPT isn't reliable for the sex chromosomes and can give a lot of false readings, but they can test for it as they still have our sample, but we've decided against it due to the uncertainty surrounding the results.

We couldn't have the cvs last week due to placenta position so we have to wait for the amnio at 15 weeks
They are going to do the structural scan at the same time which can show up major issues but most of the smaller issues will need to be detected at 20 weeks.

Yes the waiting is the worst I agree
Fingers crossed your new job places your mind elsewhere and keeps you busy

@Tig2010
How are you? Have you had your results yet? How was your scan last Thursday?

Hey @weivfgotthis - urgh, it’s all got a bit ridiculous. We had the CVS done three weeks ago now and were told to expect results last week. The lab then told the midwives last Friday that the sample needed to be cultured further and that results would probably take another few weeks. They are estimating 30 Nov. We were so frustrated when we found out! I don’t think I’ve heard of it taking 5 weeks to get results before. I’ve seen 3-4 weeks on here before but never 5 - makes me wonder if they’re short-staffed due to Covid or something.

The heart scan was fine, so that’s good. Thanks for checking in! How are you doing?

@Tig2010 wow I've never heard that before! My suspicious mind would think they had lost the sample or something and they were playing for time. I hope this is not the case!
You got your first set back right? The first 3 trisomies?
Glad to hear the heart scan was fine, I have mine on Friday plus the amnio if we decide to have it (we can decide on the day)
Feeling apprehensive and I just want to fast forward to Xmas when I will be 20 weeks x

@weivfgotthis

I totally agree about losing the sample - that’s crossed my mind several times... apparently if a sample needs to be grown for longer than normal, they’d log it on the system, which they didn’t for two weeks. V suspicious! Yup, the first set came back (v promptly!) and all clear for 3 main trisomies and sex chromosome.

Good luck with the heart scan! My heart was thumping in my chest esp as it took her ages to find the right angle, so try not to worry if it takes a while. Do you have a feel yet for whether you’ll go for an amnio?

I’m also wishing I could just get to 20 weeks already. It’s such a weird time and I’m sure all this uncertainty isn’t particularly healthy long-term! We’ve got our anomaly scan and second heart scan on 21 Dec.

Would love to hear how you get on this week if you’re happy to share. Xx

@Tig2010 how are you getting on?

@Sixpencefaux hey! Our CVS came back all clear a few weeks ago and we have our 20 week scan + fetal heart scan this week. I was feeling calmer after the CVS results but with a few days to the scans am now slightly apprehensive!

@weivfgotthis how are you doing lovely?

@Tig2010
Congrats on the clear cvs so glad they finally got you your results!

I'm doing ok so far... after the low risk nipt we had a 16 week heart scan with the consultant at FMU and all looked good from what they can see at that stage, so we decided not to risk the amniocentesis and we are now waiting for our 20 week scan with echo which is next week.
I'm feeling pretty nervous about it but trying to stay positive
I can also feel movements now which is so lovely!
When is your scan?

@weivfgotthis ah, so good to hear that the heart scan was fine. Both our scans are this Wednesday. After all this waiting, it feels quite strange that we’ll know more in a few days. I’m equal parts worried and looking forward to it. I’ve got my fingers crossed for you too! The fact you’ve had good NIPT and heart results so far sounds very promising! How are you coping with the wait? Luckily I started a new job last month so that’s been quite distracting.

@Tig2010
Oh, I'm wishing you so much good luck for weds! Glad you've been keeping busy! I have too mostly with Xmas prep for my little girl!
Let us know how you get on if you feel able x

@Tig2010 how did you get on with the scan? X

Hello @weivfgotthis - thanks so much for checking in on me! I tried to post an update yst but my phone kept scrambling the message up. It went well! Very very wriggly baby so it took ages to get clear images for both heart and anomaly scans, and I had to take a walk half way through to try to move him from breach position, but when we finally did get the right angles it all looked ok. And the nuchal fold was 4mm so back to normal (in fact, didn’t appear to have changed at all). Apparently I have a low-lying placenta (whatever that means!) but it should resolve itself by 28 weeks. It’s such a big relief and I hope a comforting story for you and anyone else in a similar situation.
When is your scan next week? How are you doing?

@weivfgotthis good luck this week - I’ve got everything crossed for you xxx

@Tig2010
I've had the 20 week scan and I'm pleased to say all was fine!
I'm the same as you .. low lying placenta, they said 9/10 cases resolve themselves so I'm not too worried about that.
We are discharged from fetal medicine back to MW care which I'm pleased about
Means we are as low risk as we ever will be. Such a happy early Xmas pressie!
Thanks for checking in and I hope you have a lovely Xmas! x

@weivfgotthis I’m so delighted for you! Hope you had a lovely Christmas - and thank you for being my buddy along the way here. Wishing you all the best for the next 4 months xxx