Nuchal translucency increased

[Jessicagould]

Hi I wonder if anyone can help me out to not feel so lovely.
on my 12 week scan I was told that my babies NT was 5.1mm which is then high risk going with my blood results they gave baby 1 in 2 chance of Down’s syndrome. I was sent to UCLH in London for someone to double check and go over options. I chose to have a CVS test done and was a complete mess waiting for the results. Both of these results come back clear I was so so happy. I then was booked for a 16 week cardiac scan to check babies heart etc but as I was there the sonographer found the nuchal translucency had grown even more which indicates there is something wrong. I’m now back to being a complete state worrying and have been sent for a something called Exome sequencing to look further into chromosomes. My head is so scrambled and I just wondered if anyone else has been through the same thing.
thankyou

I don’t have personal experience but also didn’t want to read and run. Offering you a hand hold, I hope you get some answers soon X

Hi @Jessicagould so sorry to hear you’re going through this worry :( I don’t have direct experience to share but our son did have an NT of 4.7mm, greater than 1 in 4 chance of T21. His increased NT had resolved by 16 weeks however and the amino came back clear. We never did find a reason for it…

I can remember the torturous feeling of waiting though and I can’t imagine feeling relief and then having worry again :( How are you doing? Have you heard any more on the next steps for testing?

Thinking of you ❤️

Thankyou so much for your reply it really does mean a lot, and it’s so nice to hear you had a positive outcome in the end I try to cling on to that hope.
I can’t lie I am really struggling mentally with taking it all in and it’s the waiting that’s the hardest part. It’s so hard because I’m trying not to connect myself too much with baby but it’s easier said than done.
I just keep praying things will work out in the end.
I had a phone call with great ormand street hospital yesterday to go through the process of the Exome sequencing. She was really lovely but she said it’s definitely going to be about 3/4 weeks before i get any answers x

@jmm499 Thankyou so much for your reply it really does mean a lot, and it’s so nice to hear you had a positive outcome in the end I try to cling on to that hope.
I can’t lie I am really struggling mentally with taking it all in and it’s the waiting that’s the hardest part. It’s so hard because I’m trying not to connect myself too much with baby but it’s easier said than done.
I just keep praying things will work out in the end.
I had a phone call with great ormand street hospital yesterday to go through the process of the Exome sequencing. She was really lovely but she said it’s definitely going to be about 3/4 weeks before i get any answers x

@Jessicagould I feel for you so much - 3-4 weeks 😩 It’s so hard - I remember not wanting to get attached but that’s almost impossible isn’t it? It was a very difficult time for me, I barely functioned. I really, really hope things work out for you.

How is your baby looking on the scan? Have they seen anything else that’s of concern? I saw some doctors who were really reassuring and others who made me feel like there was little hope - in some ways that reassured me that there was hope as at least there was a difference of opinion…. I know I can’t say anything to make you feel better but know that I’m thinking of you and sending so much love and strength. Do you have good support around you? Xx

@Jessicagould I’m also waiting for Exome results and really struggling with the wait. It’s a whole new kind of torture isn’t it. When were yours sent off?

@Biscuitsandgravyforyou aw it’s awful honestly I know exactly how your feeling. Mine was sent last Thursday so it’s only really been a week 😔.
when was yours sent off?
it’s like a rollercoaster some days I think it’s going to be okay other days I don’t have as much hope.
if you need someone to talk to my messages are always open x

@Jessicagould I’ve sent you a PM xx

Hello, I just wanted to share a similar story and ask how you are getting on? I went to UCLH today and did find during the CVS everything was quite negative.

I went for my 12 week scan and showed a high NT (4.9MM) but all structure of baby okay in regards to growth, nose bone, arms, legs, head etc. But because of high NT they have taken my bloods and then referred me for a CVS today in london which they confirmed high NT and fluid on chest exact words were; generalised skin oedema and fluid in the fetal chest (hydrops). We suspect a cardiac anomaly but the small size of the baby limits the ability to diagnose this for certain. I’ve only just turned 24 years old and this just doesn’t seem right to me nor fair due to my luck the last few years. I have got a lot of satisfaction out of some of the replies on here but i can only see some dated but i am new to this. I just wondered if anyone had any advice, had anything similar and it’s all very grey at the moment and they seem quite negative about the high NT which i am prepared for the worse but just want to hold some hope as really don’t want to loose the baby. Thanks x

@Liv2308 hiya hun,
It sounds like a very very similar situation to me I’ve gone through the CVS and also was offered Exome sequencing both came back clear with no abnormalities detected.
my baby had a generalised skin Odema too at the back of her neck at 16 weeks but I just went back to UCLH yesterday for my 20 week scan and they have completely gone! All I can say is please don’t give up hope because I know for sure I did. The hospital have to give you the worst case senario I was even offered a termination which I’m so so glad I didn’t take until I got a clearer picture.
If you need any more advice or anything my inbox is always open I know I found comfort in talking to people x

This is amazing. I’m so happy this was your results and I’m so praying mine can be the same. I just think as well if I can be as positive as I can for a while whilst I’m awaiting the results it’ll be the best thing for me and baby. Really appreciate your reply and wish you all the best x

Amazing to read your update @Jessicagould I’m so pleased for you 🥰🥰🥰

@Liv2308 I hope it’s the same happy outcome for you and your baby - sorry to hear you’re going through this worry too x

@jmm499 Thankyou so much I appreciate all the help and messages I got when I was going through it all 💗💗

@Liv2308 I’ve got everything crossed for you 🤞🏻💗and like you said being a little bit positive is definitely good for you and the baby too, I just tried to keep busy and occupy my mind as much as possible so I didn’t keep getting horrible thoughts xx