Cystic hygroma

[CherryO88]

I am 11 weeks pregnant. I had a scan and bloods for the vision nipt 3 days ago when a high nuchal was picked up. I paid to see a fetal medicine consultant yesterday and he confirmed elevated NT, possibly a cystic hygroma measuring at least 5mm. To say we are devastated is an understatement. So far no other issues picked up with baby, but obviously very early yet.
Has anyone been in this position? The results won’t be in until next Tuesday at the earliest. I am driving myself insane and google gives a 90% mortality rate for babies with a cystic hygroma. I don’t know where to turn

Hi. Sorry you're going through this. My baby had a NT of 6.7mm at 12 weeks. Thankfully the CVS results came back clear and I now have a happy healthy 5 month old. It's a really worrying time. Have you contacted or looked at Antenatal Results and Choices www.arc-uk.org/ ? They're very helpful. Hoping you have a positive outcome

@Littletoaster thank you for the positive story. Unfortunately I have had experience with ARC before, I have already had the torture of TFMR. I never ever thought it would happen to me again. Still waiting for the results to come back and I’m tearing myself to pieces.

Hi. I’m sorry you’re going through this. I’ve been in your exact situation and it’s horrible. Fetal medicine gave us slightly better odds than google (and they told me to stay away from google too, although I’ll PM you a website that helped me) but it still all seemed pretty bleak.

In the end, all our tests came back clear and the cystic hygroma had resolved by 20 weeks, although the nuchal fold measurement was still slightly high. My little boy is 7 months now and doing really well, no signs of anything wrong.

Hopefully I’ve given you a little bit of hope! The one other thing I’ll say is that a lot of the “regular” doctors (as in not fetal medicine doctors) that I saw didn’t seem to know a lot about cystic hygromas and told me all sorts of things which were incorrect, so I would say make sure you ask lots of questions to fetal medicine so that you don’t potentially get confused by conflicting information like I was.

@Rbrjc please could you PM me the website too?