12+5 weeks pregnant. NT 5.5 mm. Hand hold and positive stories needed

[user1488481370]

Been for my 12 week scan this morning to be completely floored by the news that baby’s NT measurement is measuring way above what it should be (5.5mm)

We’re absolutely devastated and have been told that there’s a very high chance our baby has Downs or some other more serious chromosomal abnormality. Basically, the chances of our baby being ok and healthy are very slim.

I feel so hopeless. I’ve had blood tests today and am going back for more tests tomorrow. I don’t even know what to expect.

I don't have my outcome yet, but at my 12 week scan our babies NT was 9.9. Since then ive had a CVS test to check for chromosomal abnormalities, which came back completely normal, my blood work came back normal for virology, and i am waiting on a fetal heart echo.

I hope things work out for you. I have been told sometimes they do resolve themselves. Our NT was 9.9 at first scan, then 11.07 3 days later, but 4 days after that had dropped to 8.8.

If you have any questions about the process please ask away x

@emma1103 I really hope your echo goes well and comes back normal as your other results back.
Sorry to hear that you have this wait and worry too
I hope you don’t mind me asking how quickly your initial results have come back? If it’s weeks I think I’m going be be a write off.

We had the CVS on the Monday morning, i had a call at 8:30 thurs morning with my results for Downs, Edwards and Patau. I also asked the sex of the baby. Exactly a week later we got the full screening results from it x

No advice but I am in the exact same situation and understand how awful it is. 12 week scan yesterday and a NT of 4.2mm. Baby was being very awkward and NT measurements ranged from 3.2mm up to 4.2mm but they had to take the highest.

I have a CVS tomorrow. Spent a lot of the last 24 hours crying but had to rationalise with myself that if something is wrong with baby it’s already been decided, nothing I can do. I just need to find out the facts to make the best decision for them.

Massive hugs, but know you aren’t alone.

Hey - 10 years ago when I was pregnant with my first son he measured at 5.2mm. It felt so stressful at the time but blood tests were done and came back fine! At 17 weeks we went to the hospital for the cardio scan where they checked everything again and he was absolutely fine. Just wanted to comment to show that things are often ok but know exactly how you feel. The hospital also handled it pretty bad at the 12 week scan when we found out and were talking about us rather than to us to which made it more stressful. Sending

Thank you for sharing @casade13, it’s really nice to hear a positive story.

Let us know how it goes

Thank you all for your positive stories and @Tulipwood I really hope all goes well for you. This is just horrendous isn’t it?

I’m trying not to google but it’s so difficult. For every positive story I find 3/4 negative ones so I’m not very hopeful.

They tried to get a sample of my placenta to test today but we’re unsuccessful so have to go back next week to have it done again which I’m not looking forward to. Baby was bouncing and wriggling like mad and I was stuck between being so happy to see him/him and so sad that they might not make it. I almost didn’t want to look. They said they can’t find any other visual markers on the scan and NT had reduced slightly to 5.2mm.

Truly horrendous but we are just trying to take it day by day at the moment. I hope you are managing ok?

Really good that they couldn’t see anything else of concern on the scan and the measurement has reduced. I hope the sampling is successful for you next week 🤞

I also had my follow up today with a consultant and he couldn’t see anything else of concern either. NT was measuring 3.6mm now and when I asked how it could have changed down from 4.2mm he said “different day”. Crazy how it works!

They were able to do the CVS on me, it was a weird sensation but really not that bad. I don’t know if it’s something your worried about but if you are I really wouldn’t be. It kind of felt like someone had poked through my belly button and was wiggling their finger 😂, very strange but no pain.

Sending you loads of positive thoughts. The waiting and uncertainty feels like mental torture doesn’t it?

@Tulipwood sometimes I think I’m managing and other times I just want to sit and do nothing and can barely function. So pleased the NT has come down for you too! That’s surely a good sign!

Yes the waiting and limbo is brutal. Absolutely brutal. My first lot of investigative bloods have come back (from the combined test) Pataus and Edwards have come back as less than a 1% chance but Downs is a 25% chance. I feel slightly more positive as they were saying a chromosomal condition was almost certain with my NT measurement. Just hope my results come back clear after the CVS testing.

Hi,
I thought I would join this group of people anxiously awaiting results.

I had the nipt at 10 weeks with great results. I went for the 13 week scan and had a nt of 5.3. I was told there was no point doing the cvs because I had had the nipt and to wait for the amnio.
I then spoke to my ob who said that there was too much fluid and I would miscarry before 20weeks or could terminate. I thought there was no hope till I came on here.

I went to the amnio earlier this week, but because I was right on the threshold of 15 weeks the fetal medicine dr didn’t feel comfortable doing it so I need to go back next week. They did do a scan and the fluid has gone down slightly. So I’m holding onto that hope.

Yes I’m very much the same @user1488481370. In quiet moments I find my mind drifting to some very dark places but when I’m busy it’s okay.

I’m glad your bloods came back positive. The way I am seeing it is every test that comes back positive increases the chance everything is okay even further. So that’s brilliant.

I should be getting my CVS results back today or tomorrow and I have such a nervous feeling I can’t shift. We had a holiday away booked with family and decided to come to take our minds of things. I just hope if we get news whilst we are away it’s positive.

@Bibbidiboo oh they must have been awful to hear! There it definitely hope. My hospital gave me a statistics table of everything being fine after certain NT measurements, not sure if you received the same? You measurement has a really good chance of things being fine. Obviously no way to know for sure yet but keep positive ❤️

@Tulipwood no I didn’t receive that!!
I was told it was inevitable.

But the fetal medicine dr told me on Tuesday with the fluid going down there is about a 50%chance of rare chromosomal and 50% chance everything is ok. I just hope they are right, not my regular op

@Bibbidiboo I’m really quite shocked that your consultant was so blunt and negative! Before you’d even had any further testing done.

People say not to google but I actually think that if you’ve got a consultant saying an adverse outcome is inevitable then coming away and doing some research and making an informed decision about the next steps to take.

@Tulipwood I haven’t been shown a table like that. I know 5.5mm (which is what ours measured at initially) seems to be just within the not so good statistics 🥺

Oh I don’t have it with me as I am away otherwise I would have shared it but I found it really comforting (but I like seeing things written out black and white). For my measurement I have 70% chance of being fine and then the rest split between a chromosome problem or heart problem. I think your measurements are the next bracket up, so maybe 60% but definitely not doom and gloom at all.

I think the thing that’s the struggle is the drs never want to say it will be fine until they definitely know it is, which is understandable. I don’t agree with them being so negative with you though @Bibbidiboo because until tests are done it’s all just a game of odds and chance and nobody truly knows.

I can’t imagine how awful it is for someone to be that negative but I hope you can keep some faith until all your results come back.

Couldn’t get a sample from the placenta again, they didn’t attempt this time, the consultant scanned me and said he didn’t want to even attempt it today as too risky. Baby is growing and moving as normal and everything else looks ok which is a good sign. Didn’t mention what the NT measured at today.
Everytime I see him/her I bond a little bit more. At the moment I’m not massively concerned about DS. I’m friends with a couple of people who have children with DS and I would like to continue with the pregnancy if that’s the case. My partner wouldn’t though and we’ve had a big bust up the last couple of days.

@user1488481370 I'm so sorry, the uncertainty and waiting in this process is awful! What will the next step be?

Not having the same view as your partner must be really difficult. Hopefully he will come around to your way of thinking soon, you have to do what feels right for you. Me and my husband are set on a tfmr if we get a diagnosis and it is a really tough, horrible decision to make but I know it is the right one for us. Hopefully neither of us will ever have to actually make the decision!

Ah frustrating @user1488481370! Will you wait for the amino now?

@user1488481370 that is so frustrating, the waiting is horrible. I’m 16 weeks now and just had my amnio this week, so another 2 weeks for the results.
I would suggest getting an nipt while you wait to Atleast help fill in the blanks while you wait.
My nuchal was 5.3, but because of nipt results they are fairly confident it is not downs, Edwards or patious.

Could you do a NIPT test op? If you’re in the UK I think they are meant to offer NIPT if you have a high risk screening result.

I got told my first had a strong chance of DS and or CHD at my dating scan, they never even took the bloods. Everything was absolutely fine, NIPT test showed everything to be low risk. We got our results in around 7 days.

Hugs to you, waiting in limbo is the absolute worst!

Update: Down’s syndrome diagnosis confirmed. We’ve got some tough decisions to make.

Hugs OP. How are you feeling?

I’ve never been In your situation and I don’t know what you’re thinking but I’ve heard a lot of people who have been in your situation have done some research on what a diagnosis of DS means and found it’s not what they might have initially anticipated. I’m sure someone will be able to point you to some resources if you are interested.

Have they referred you to a genetic counsellor?

@user1488481370 I’m so sorry to hear about your results!! You said you had some close friends with Down’s syndrome, I hope you can reach out to them for support.

Please know whatever you choose to do will be the right decision for you, your family and your life. 💕💕💕

What a difficult thing to go through @user1488481370. Sorry to hear you are in this position of having to make such big decisions.

Have the hospital provided support?