Really bad 12 week scan.........advice/help please x

[Kitty0421]

Hi, am a complete newbie here and just joined as I'm desperate for some advice on what's happening. Went for a 12 week scan and was told my baby has a nt measurement of 4.5 and hydrops. Have had blood taken and have been told that I currently have a 1in 5 chance of having a baby with Down's syndrome but they are more worried about the hydrops. They have booked a scan next week and said they will defiantly know what's happening by then, not sure how they will know just through another scan unless it's really that bad? Would it be wrong to just have a termination without any further testing? I am thinking that hydrops and a nt measurement of over 3.5 can't be good? Has anyone experienced this. Thanks for taking time to read xxxx

Oh Kitty, you must be so stressed. I've got no experience of this myself but someone will be here with something useful to say soon

Sorry, no experience either, didn't even know what hydrops was until just now.
It's easy for me to say wait for the next scan and clearer news but I would be beside myself.
I hope you've got some good support.
Someone with some knowledge should be along soon.

Bumping for you

Maybe put this into chat for more responses.

No personal experience but the NT alone wouldn't concern me unduly. It's not great but there are plenty of people with stories or scores like that who have gone on to deliver babies with no other issues. The hydrops is another matter I think and I would be concerned, as you obviously are. I think it would be a good idea to try and work through with your partner what your feelings are about different scenarios and in exactly what situations would you want to terminate. It will be helpful for you to both be on the same page with this though hopefully of course everything will look much better next week.

ARC (Antenatal Choices and Results) are a fabulous supportive charity who can guide you through the testing process and give you support. I have been in this position twice and their support really helped me get through it all.

www.arc-uk.org

My advice would be to take a step back before you make any decisions - the most important thing I learned when I was in this position was it was important to make the right decision (what ever that might be) and that you needed to weigh up the information and also find some space to think.

Thinking of you and hoping for a good outcome.

OP, I'm very sorry that you're in this position. I had a similar experience at my scan, although the NT measurement in my case was over 6. Although hydrops is very worrying, I think the prognosis is affected by the underlying cause of the hydrops and high NT measurement, and you might therefore want to wait a little longer to try and find out what that cause is (via a CVS/amnio, blood tests) before making a decision. I spent a very difficult month getting this information, and monitoring the progress of the hydrops via scans. While this didn't lead to a happy ending in my case, the information gave me (and my partner) the confidence to make the difficult decision to end the pregnancy. On balance, while waiting itself was pretty wretched, I'm glad I did.

The hospital I attended offered me sessions with a clinical psychologist, which I found really helpful. It might be worth asking when you head in for your next scan whether there's any facility like that?

Just wanted to say I've known of happy outcomes with hydrops and it has resolved on its own with no further complications. Obviously it's not always good news, but I just wanted to say it's not impossible for a good outcome. As offbeatgirl says, it's the underlying cause of the hydrops that is the issue mostly, and sometimes these things just happen for no bad clinical reason.