12mm NT measurement

[HungryPanda92]

Just had my 12 week scan and have been told that baby's NT measurement is 12.5mm. They took blood for the screening test but the consultant was in a meeting so couldn't speak to us about it. Home now and she's just called and basically said because the measurement is so high they won't be able to get a screening result anyway so bloods were basically pointless and even if they can it will definitely come back very high risk. She said "baby looks very poorly" and that the fluid has spread into the lungs and chest which isn't good. I'm absolutely devastated.
No idea whether I want to have further testing or what to do. Just feel so lost.

I'm so sorry OP.

I'd recommend contacting the ARC-UK helpline tomorrow. They are very supportive and will listen and/or give information.

At my 12 week scan my baby had fluid across his body p!us a high NT measurement. He had Downs and a heart defect, plus some other physical abnormalities. He probably would not have survived pregnancy. I had a termination, which was heartbreaking, but not regretted. Everyone has to make their own decision, and it's a hard one.

TBH 12mm is very high. I guess your options are CVS or NIPT? I went for NIPT, with results confirmed by CVS afterwards. in the same position again I'd probably go straight to CVS as the NIPT really stretched things out, and is probably have needed/wanted more tests if it had been clear. Worth keeping in mind that testing will not pick up all serious abnormalities.

I have heard of people having incredibly high NT measurements and things being ok.

I'm so sorry you are facing this worry and uncertainty. I hope you are well supported. Be kind to yourself xx

@sylvanianfrenemies I can't afford NIPT anyway tbh so straight to cvs I think. I've been referred to the hospital in Sheffield as they have more experience than my local hospital and should be having a scan there next week and a chat with one of their consultants.
Its so hard not to feel like a failure.

@sylvanianfrenemies and I'm so sorry for your loss. My emotions are all over the place, that should have been in my original post but I can't seem to get my head straight at the minute, I'm sorry.

Glad you have an appointment set up. Hopefully you won't have to wait too long to have a clearer picture. I understand what you are saying about feeling a failure. In time though, (I had my DS in January) I've seen that he was who he was, nothing could change that, but his life was not to be what we hoped.

I hope you get a better outcome. Is this your first baby?

Yes first pregnancy. Its all such a shock to the system. It's my birthday on Sunday so just going to try and get on with life as best as possible. Hopefully I'll get seen sooner rather than later at Sheffield as the waiting is going to be awful. I'm trying not to get my hopes up too much as I don't know how I'll cope if it's worst case scenario.
Thank you so much for your support. It means a lot xx

@HungryPanda92 I am basically just over a week further on from you having had a bad scan last Wednesday. I don’t know if you have seen my thread here:
www.mumsnet.com/Talk/antenatal_tests_choices/3634479-Very-high-NT-measurement

It’s a horrible, horrible time. I had CVS a couple of days after my scan and got the results earlier this week, my baby has Down’s syndrome and I am waiting for a TFMR.

I hope you get answers soon as for me the waiting and not knowing was the worst part. Take care x

So sorry for this news you've received. In your position I would probably go straight for CVS too. I am waiting for NIPT results (haven't had NHS scan yet) but it takes 7-10 working days and is driving me crazy. I don't think I could cope with that wait and then maybe have the CVS anyhow.

Hope that you get some better news from the CVS.

@DinoGreen I have been following your thread yes. I'm sorry you're having such a difficult time. When you get to that stage it should be made as easy as possible. I can't imagine how you must be feeling being messed about like that. Reading through the posts on your thread have made things a bit more manageable for me. I think it helps knowing you're not alone. And that there is a future after all this awfulness. And it's helped me think about things that, without the posts on your thread, I probably wouldn't have been able to bear thinking about. I feel much more prepared for all outcomes. You hear about bad outcomes and but I never imagined I'd be in this situation.

@tisonlymeagain I'm going to the Sheffield hospital for another scan on Tuesday and I hope they can get me in for the cvs as soon as possible. At this point I just want answers no matter what they are. I hope your NIPT results are good.

Best of wishes to both of you

@HungryPanda92 so sorry you are going through this, the waiting is the worst :(

Some hospitals do CVS straight after the specialist scans (ours did) so it is probably worth checking that if you haven’t already. Worth knowing so you can arrange comfortable transport home.
Sending hugs x

@HungryPanda92 thanks for your message on my thread and I hope your scan goes ok tomorrow. Like Tini17 said, I had my CVS at my appointment with the specialist - she did the scan first to confirm the NT measurement and look for any other issues, then talked me through all the options (which the screening midwife had already done straight after my first scan, but it was good to go through it again and in more detail), and then she asked me what I wanted to do and I confirmed I wanted the CVS. The doctor said she would need to check the position of the placenta again and then she said it was fine and she could do it there and then. It was uncomfortable but not too bad and over quickly. I was sore afterwards so Tini’s advice to make sure you have comfy transport home is good.

Thanks @Tini17 and @DinoGreen. I've called the hospital today and they've said that they plan to do the cvs tomorrow if possible. My mum is going with me so she's driving. I've let my manager know I might not be in on Wednesday as I don't know how I'll feel afterwards. Was it painful the day after?
Hope you're feeling okay today DinoGreen. Or as okay as you can be in this situation. Lots of love

Good that they will try and do it there and then.
My hospital advised 24-48 hours rest afterwards so worth thinking about @HungryPanda92. I didn’t find the procedure painful, just odd and uncomfortable. Wear something comfy across your tummy (I didn’t think that far!).
It wasn’t painful afterwards bar the odd sharp twinge as the anaesthetic wore off. They monitor you for a bit afterwards too to make sure all is well.
I think the stress of it all is exhausting so a gentle day after is probably a good idea - they will explain in detail and if they don’t, ask.
Sending love and hugs x

I just felt a bit sore and tender on my tummy for the day or two afterwards, and like Tini was told to take it easy for 48 hours. Mine was done on a Friday though so I didn’t need to worry about work over the weekend anyway. Best of luck x

Hope you’re doing ok @HungryPanda92 x

Home from hospital now. Had another scan before the cvs. The NT measurement is now 15mm so it's grown 2.5mm in 5 days. The professor I saw said there's not much chance of a good outcome no matter what the results with so much fluid surrounding baby. Decided to have the test anyway just to get a better idea of what is going on. The cvs test was uncomfortable like you all said. They went in twice to make sure there was enough sample to test. I had my eyes shut the whole time. Bloody awful.
Guess I just have to wait now but it seems like no matter what results come back we'll have to terminate. Had a bit of a cry when I got home to my DP. I suppose I need to start thinking about next steps now. Just hope the results come back soon.

Glad you’re home and they were able to do the CVS today @HungryPanda92. Sorry to hear the outlook is not looking too good. My results were back on the second working day (Tuesday after CVS on Friday) so hopefully you won’t be waiting too long either. Take care of yourself x

Hope you’re (and DP) doing ok @HungryPanda92 and I’m glad that they managed the test there and then.
Hope your wait for results isn’t long, whatever the result.
Sending hugs x

So I got my results this morning and they've come back clear. Don't really know how to feel about it because I was expecting something to come back with everyones reactions to the massive NT measurement. I honestly thought it was inevitable. I'd got used to the idea that we would have this result and then a tfmr.
But now I don't know whether to wait till 16 weeks so that they can look at the heart and organs or just make the decision based on knowing there is something very wrong for the fluid to be all round baby's head and the measurement be so high. Feel at a loss now.

Oh @HungryPanda92 that’s so so hard. I’m so sorry.

The first result is only the Downs, Edwards and Turners result, so you should get full results after about 10 days.

Is it worth phoning and asking to have another scan/appointment to get a second opinion?

I’d also recommend phoning the ARC people, they have so much knowledge around this area and might be able to give you some open advice.

Thinking of you

Goodness me @HungryPanda92. Well, it’s good news that it’s not a trisomy but I guess you are no clearer and the CVS doesn’t look for everything.
Has your screening midwife /consultant offered to meet with you to talk through option and possibilities? I would press them if they haven’t yet?

You poor things @HungryPanda92, I know I was almost dreading a clear result for the same reason, that it just meant more waiting and worrying and unknowns. Agree with the suggestion to speak to the specialist midwife and/or ARC.

If you decide to wait and see what a 16 week scan brings, one thing you might want to consider is it putting the termination process in motion in advance, as you may have seen on my thread it was a bit of a nightmare for me getting a surgical termination arranged. Of course you may prefer to wait and see or you might want a medical termination if you decide to terminate, in which case that can usually be accommodated quite quickly in your hospital from my understanding.

Thank you all for your messages. I have an appointment next Thursday to see the consultant. They're hoping my next lot of results may have come back by then too.
It's so hard because everything we've heard tells us baby isn't going to make it but then this first lot of results gives me false hope that maybe they've got it all wrong.
I think when I go in on Thursday I will talk to them about tfmr and getting booked in. I really don't know whether I would rather have surgical or medical. I guess I'll have to talk all that through too.

@HungryPanda92 i'm so sorry you are going through this. I just had my scan yesterday and baby measured 12mm. I was also looking for some insight from someone who's gone/going through a similar situation and found this post. I elected to do the CVS same day and am waiting for the prelim results to come back today. I hope for the best for you

@HungryPanda92 how did your appointment go today? I hope you’re doing ok.

@peachywren I’m sorry you’re in this position too. It’s horrible. I had a TFMR last week after a NT measurement of 5.5mm, followed by CVS and Down’s Syndrome diagnosis. It’s good you were able to have your CVS the same day. The waiting for the result is the worst bit x

@peachywren I'm so sorry. I know it's not what any of us expected and its such a shock. It does get better as you process things but I still cry at points. @DinoGreen 's thread was really helpful to me as there are some lovely ladies who have gone through the same thing. www.mumsnet.com/Talk/antenatal_tests_choices/3634479-Very-high-NT-measurement

As you probably know, my first set of cvs results came back clear, I'm still waiting for the full karyotype results, but my consultant thinks the odds of it being genetic issues are very low in my case. Unfortunately the fluid around baby's head has gotten bigger and baby will most likely not survive pregnancy. I had another scan today and the fluid is something like 25mm with fluid on baby's brain now too. For that reason I've made the decision to have a tfmr. I really hope you have a better outcome and I've got everything crossed for you. Please let us know when your results come back, I hope they're quick for you. I'll be thinking of you.

I'm booked in to have surgical termination on Monday. I'm lucky as my local hospital will carry them out up until 18 weeks. One of the few in the country that will. I was dreading having to wait for an appointment with BPAS as I'm ready for this to be over with now.