High NT at 12 wk scan - CVS next

[OneDayHope]

Background is I’m 31 and been TTC for over 2 years, no children, first 2 pregnancies ended in MC. Now on my 3rd pregnancy, had a scan at 8+4 and all was well, felt it was a good sign as my 2 previous pregnancies had both ended by that point but still incredibly nervous. We went to the 12 wk scan yesterday, biggest worry was we’d turn up and baby would’ve died but nope alive and kicking but I just knew when I saw them take the NT measurement it looked big, then she broke the news it was 5mm so at risk of chromosomal issues etc. I had opted for the screening so then went for bloods, now waiting to be told if low or high risk but MW was honest and said v likely high risk cos of the 5mm measurement and even if it was low risk because of that measurement they’d want to do further checks anyway. Spoke to the MW earlier and asked what next, she mentioned NIPT but I was honest and said I know that wouldn’t satisfy me even they came back low risk so just want to jump to diagnostic, so booked in for CVS Thursday (I know this comes with risk of MC but risk
seems v small and willing to take the risk).
Positive similar stories please of everything miraculously ending up ok?! Not feeling any hope at the mo and brain has already jumped to baby being so poorly they’ll soon die or we’re faced with TFMR. TIA x

Hiya. Firstly, sorry you’re going through this ♥️

we went for our 12 week scan and were told NT was 4.5. Consultant and midwife basically told me to abort there and then on the spot… Were told we were a 1 in 3 for Downs Syndrome. Long story short, we had the CVS and all came back clear. Were monitored by fetal medicine throughout our pregnancy for growth and heart conditions. All tracked perfectly and we were discharged at 28 weeks.

fast forward, and I’m now sat here with a 3 week old boy asleep in my arms. He’s absolutely perfect 💙

dont want to give false hope, but I’ve heard this happen a lot and in some situations it does all work itself out. Don’t lose hope x

Thank you so much for sharing your story. I’m so pleased you had a happy ending 💙
I need stories like these to keep me going.

I know they need to be realistic and don’t want to give false hope but everything we’re told feels completely doom and gloom.

I had the CVS Thursday, thankfully v straightforward, so should have the initial results by end of day Tuesday x

Completely understand the doom and gloom vibes. Everyone was so negative with us, making out there wasn’t a glimmer of hope. I know they have to prepare you, but they make out like there’s no chance of a happy ending at all. Massive part of me wants to take my son back and be like, LOOK AT HIM! Haha. But that’s me being petty!

glad the CVS went well. I didn’t find it anywhere near as bad as people were making out. If you feel comfortable sharing, do update on Tuesday. Sending you the best wishes - got my fingers crossed for you x

We had an NT measurement of 3.6mm - I know that's less than yours but we went through the same process with the screening and the CVS - the risk is tiny and we are 'knowledge is power' types so couldn't have just waited for further scans. I spent hours trawling the internet for similar stories and found more good outcomes than bad, Reddit had a lot, if you wanted to read? I know that's not for everyone, but one example here: https://www.reddit.com/r/NIPT/comments/144e9be/final_results_enlarged_nt_50mm_clear/

I know how awful the waiting is - ours was an IVF baby after a long time of trying so I understand where you are, but hang in there! (easy for me to say now as everything is clear) - it's only one measurement that ISN'T diagnostic like you say, and you're young so that stands in your favour for the screening results.

Have they suggested a fetal echo? I had two at 16 weeks and 22 weeks, even after the CVS came back clear.

Sending much love x

@Frankie2607 that's appalling behaviour from the staff re aborting. I'd be wanting to also go back and show them just how wrong they were!

@loulamay i was so shocked when that was the attitude that came across. Unfortunately, I’ve heard a number of similar stories from women ☹️ x

Thank you so much for your reply, so pleased to hear everything is clear for you!!

Yes definitely trying to cling to any positive stories, so grateful to you for sharing, I think I’m slowly but surely reading the entire internet on this whole process whilst I wait results.

From what I understand will get initial CVS results by end of day tomorrow, then more in depth results from that in the next 2 weeks, scan at 16 weeks, 20 weeks and 28 weeks, so sounds like same process you went through.

I had the overall screening results come through and they were low risk but the Dr and MW at the clinic were incredibly shocked by that and have basically said not to cling on to that as the 5mm is of ‘significant concern’…sigh!

Thank you again for sharing your story, means a lot x

We had a really high NT with our second.

NIPT came back all good, but we were referred to fetal medicine.

The much more detailed scans taken at fetal medicine a couple of weeks later the NT was completely normal.

Hope all is well.

Initial CVS results are in, no evidence of T21, T13 or T18 so the best possible news to receive at this stage. Now the waiting game for the more in depth results but going to try put that out of mind mind (ha!) for the rest of this week as I know they’re unlikely to come until late next week.

Amazing news!!

@OneDayHope ahhhh that’s super news! So happy for you. We had our full set results back a handful of days after the initial results, so they might come sooner than you think ☺️ x

Just to update that Microarray has come back clear, absolutely over the moon! Going to make the most of feeling relief before the panic sets in for the next hurdle to get through (scans)! x

Another update to say 16 and 20 week scans looked normal, i’m amazed as at 12 weeks I really did think it was all over. Another scan at 23 weeks for another in depth look at heart so the nerves will soon kick in again for that but for now enjoying having had positive news at 20 week scan ❤

Your story gives me hope. This is my second pregnancy after having a miscarriage. I've been given a 1:2 chance of baby having down syndrome and I'll be going for my CVS test on Monday. I'm so worried that we're going to get a negative outcome. How did you get through it? X

@Clg19x I’m so sorry you’re going through this. There’s no easy way i’m afraid, just be very kind to yourself and try to busy yourself as much as possible to distract your mind. One step at a time, so at the mo I imagine you’re v nervous about cvs, this is an incredibly quick procedure and I experienced no pain at all just felt a tad odd for a matter of seconds, they should get results for Downs, Edwards and Patau to you in 3 working days max, so by mid week next week you should have some diagnostic answers. I’ll be thinking of you and got my fingers crossed all testing comes back clear xx

That's really positive news!

Just want to keep this updated, 23 and 28 week scans all normal💞