High Nuchal translucency/Nuchal fold

[Liv111]

Hi all,
Was wondering if any of you on here have ever been through a similar thing and if so, what the outcome was...
At 12 weeks, my partner and I went for our 12 week scan - we were unfortunately told that our baby had too much fluid at the back of the neck and were sent to the feral specialist unit in London for a further scan. We discovered that the baby had a NT of 7.8mm and also had fluid around the abdomen and brain. Naturally we were devastated and all of a sudden had so many decisions to make. We were told that the chances of me having a mc were extremely high and that I would most likely pass the baby before 16 weeks. They offered an amniocentesis but we turned this down - even if we discovered that something was wrong with our baby, we knew we would be committed and continue with the pregnancy anyway. We were also adverse to heightening the risk of miscarriage. We were offered termination which we declined. We were told that even if the baby did survive then there would be a really strong possibility that a) the baby would not survive b) the baby would have a severe genetic condition. Anyway, we came to sixteen weeks and no miscarriage. We went back to the specialist unit for a further scan and were told that the NT had decreased to 6.6mm and the fluid on the abdomen and brain had completely gone. Again, we were offered an amniocentesis but declined. We are now at 22 weeks and at 20 weeks had our anomaly scan. The NT is now classed as the Nuchal fold and is still showing as 6.6mm. The normal size of a Nuchal fold at 20 weeks is 6mm so we are only 0.6mm off! The babies heart is fine and there are no other markers of any form of genetic condition. We also found out that we are carrying a little girl. We were really happy with this news and because there are no other markers, we did not feel the need to carry out the invasive tests. We have now decided to continue the pregnancy as normal and have left whatever will happen to chance. My oh is naturally really happy but I can't help but feel there is still a small chance things could go wrong and it is ruining my whole pregnancy. I have been signed off of work with depression and anxiety and am trying my hardest to be positive for my little girl. I feel like I am just waiting for the outcome and not knowing is driving me crazy. I sometimes wish we had the amniocentesis but also realise that there is a small chance the outcome could be completely different if we had done as there is a risk of mc associated with the invasive tests anyway. Just wanted to know if any of you ladies had come across this before and if so then was everything okay and how did you cope?

[wombthereitis]

Haven't got any experience of this myself but have you considered paying for a Harmony test? I understand that you wouldn't terminate under any circumstances but perhaps a Harmony test would help to relieve your anxiety by letting you know what you might need to prepare for (if anything!)

[Liv111]

We looked in to this s straight get away but were quoted £500 which we just don't have!

[JeffreySadsacIsUnwell]

We had very similar, though in our case the fold/fluid was 13.9mm deep at greatest measurement (cystic hygroma).

We were told the same as you. However, we opted for the amniocentesis after research - the consultant who did ours is pretty well known in the field of fetal medicine and said that in however many years of doing amnios (pretty much since they'd been introduced!) not one viable pregnancy had miscarried; all those who had miscarried within a couple of weeks were, like us, at extremely high risk of miscarrying anyway and all the foetuses had conditions incompatible with life, as the amnio proved.

The reason we did the amnio was because whilst we wouldn't have terminated under many circumstances, partly because of recurrent miscarriages, I am not sure I could have carried a pregnancy almost or to term knowing that there was no way the baby could survive birth, especially as we had DC1 to think of - and because if we didn't terminate and the baby was likely to be born with abnormalities such as heart problems, we wanted to make sure we had the best possible team on standby for the birth, fully prepared and ready to operate immediately to give best chances if necessary. We did have a lot of scans as well - have you been offered detailed cardiac scans, etc? We were sent to various specialist hospitals, Kings, Evelina at Tommy's, etc for different specialist scans.

The fluid reabsorbed eventually. DC2 was born at 38w by ELCS, just under 9lbs, looking like a little rugby player. He had a thick neck (but we were looking for it - he also had rugby thighs!). No abnormalities. He's now the skinniest 4yo imaginable despite still having the appetite of a rugby player.

Wishing you all the best, it's a horrible time and made worse because it should be the happiest time - but it is difficult to be happy and make plans when you're so fearful of unknowns.

[KittyandTeal]

The standard stats for MC after amnio are not entirely accurate when you look in to it (there is research out there)

The consultants and specialists at kings and other specialist settings generally have much better stats.

A harmony would only pick up 3 main trisomies which sound unlikely if you have no other anomolies at your 20 week scan.

An amnio, however, would pick up rarer chromosomal or genetic issues.

It might be worth asking for a few additional scans just so you can keep an eye on things and if anything changes you can get a care plan in place for after you deliver.

Best of luck 💐

[Liv111]

Jeffrey - I'm so happy to hear everything turned out okay. That's a big measurement and I can imagine it must have looked pretty bleak at the time! We haven't been referred anywhere else other than imperial who will monitor baby every four weeks and cardiologist every eight. The whole process has really been quite horrific. We have felt as if we had no support from docs and after three attempts at setting up/attending genetic counselling to be told that we can't be seen we have felt pretty uninformed and have therefore used the Internet as our main source of info which is just as bad!

Kitty - initially we looked in to the harmony to rule out the three main trisomies but you are right, in hindsight we should have got the full amnio just to rule everything out. I am constantly wondering whether we have made the right choice and suppose in essence have only got myself to blame for the current situation I am in. It's extremely hard to make split second decisions. It has all been a huge blur :(

[KittyandTeal]

Ah I see, is it now too late for an amnio? If so sorry, that may have come across as a bit condecending!

Have you and your DH/dp had bloods and a full karyotype done? That could rule out anything inherited until the baby arrives.

I'm glad it has been good news, although I guess the worry never goes away

[Liv111]

No not condescending at all! Don't be silly :)
We haven't actually been offered that. I think it's something we should look in to? Do you know if that's something the hospital would offer or whether we would have to do that privately?

[KittyandTeal]

I'm not sure.

We had ours done at kings are being refered for a small brain anomoly for dd2. Turns out she had T18 so our karyotype didn't produce any additional info (it was a full trisomy so no translocation)

I think (it's all a bit hazy) that it was done for research by the hospital. It's worth asking though.

[Worriednewmom]

Hello

I had my 12 week scan yesterday. As I was leaving she mentioned one picture showed a higher nt of 3.5 so would have to refer me for further tests. I’m waiting on my blood results now before another scan with Fetal medicine. I’m worried sick!!! Has anyone else had experience with this please? X