NT 3.8mm, 1 in 28 risk of downs

[Robs20]

Posted this on the pregnancy board but haven’t had any responses. Can anyone here help?

Totally gutted. My first daughter had an undiagnosed condition and died at the start of this year.

I was very nervous about this pregnancy and the risk of something happening again, but so hopeful it would be ok.

Just had my nuchal scan and twin 1 has NT of 3.8mm and 1:28 risk of downs. Twin 2 was low risk (but then again so was my daughter and she wasn’t ok).

I’m having the cvs either tomorrow or Thursday but now feeling confused. The sonographer gave us a leaflet but basically said nothing else. She didn’t comment (and I didnt think to ask) on whether the babies were physically ok. I’ve read there are other physical markers of issues (heart defects, nasal bridge etc).

Would really appreciate other experiences of high NT, good and bad outcomes so I can prepare myself. They have said if baby doesn’t have downs it is likely to have a cardiac issue :(

[cattaxi]

I’m very pleased to hear that @Robs20. Hopefully your cardiac scan will give you the all ckear

[champagneandfromage50]

Good luck going forward. I was 1:32 with my DS1 and he is fine and my DS2 was 1:4 and was fine too. Bloody terribly time waiting and anxious at every step

[Herocomplex]

I’m so happy to hear that news. Fingers crossed that the cardiac scans are good. It is possible that your baby is fine, mine was. It’s an incredibly stressful time though. Mine was this time of year too and I just kept looking at people planning Christmas and wondering how life could go on so normally. But it’s that ‘going on’ that’s so important, I realise now.
Best wishes to you.

[Robs20]

I had the call today and the results are low risk. I can’t bloody believe it!
I have to see fetal cardiology next week in case the high NT was caused by a heart defect, so panicking about that. But for now I feel huge relief. Thanks for all your support.

[cattaxi]

Hope you are managing to keep yourself distracted @Robs20. And I hope you get some good news Monday x

[Robs20]

@cattaxi they said 7 working days so probably Monday. Feels like ages!!

[cattaxi]

@Robs20 it’s really hard not to think & expect the worse.
How long do you have to wait for your results? Not too long hopefully x

[Robs20]

@cattaxi thank you! I was doing ok but have woken up today feeling so negative. I’ve been reading another thread where people are getting cvs or nipt results through and all seem to be fine. I’ve convinced myself it is me that will be the ‘1’ in whatever to get the bad results.

[cattaxi]

Hope you are doing ok @Robs20

[SylvanianFrenemies]

Don't worry, I realised that. Hope you have a restful few days and that things go well.

[Robs20]

@sylvanianfrenemies I am sorry, I totally didn’t read properly.

[SylvanianFrenemies]

@robs20 thank you. My baby had Downs and a number of major physical abnormalities. I had tfmr several months ago.

[Robs20]

Thank you @Nanmumandmidwife and @cattaxi! It makes such a difference to have a doctor that is on your side. She knew I was nervous as she was going through and saying x looks normal, y looks normal, then said, I am saying all of this out loud for you benefit. She also asked me why I had my eyes closed for the whole scan!

@SylvanianFrenemies sorry to hear that :( what are the next steps for you?

@UncleMatthewsEntrenchingTool thank you for another positive story. So glad to hear it worked out well for you!

[UncleMatthewsEntrenchingTool]

I had a 4.6mm and 1 in 3. Amnio was clear and DS is perfectly fine. It can turn out ok.

[SylvanianFrenemies]

That's great that it went so well.

For contrast, at my consultant appointment they could see a lot of fluid around my baby, and the NT was higher than measured by the sonographer.

It sounds like you are getting very thorough care, I hope things continue to go well.

[cattaxi]

That does sound like a helpful consultant. It’s great that you have someone so thorough on your team.
Crossing everything for a good result.

[Nanmumandmidwife]

That sounds like a good and worthwhile appointment. So glad you have got a team around you now who are proactive. Will continue to keep fingers & toes crossed for you
Hope the move goes well xx

[Robs20]

So, I didn’t have the CVS today. I saw the consultant who did a scan and physically everything looked normal. She measured the NT as 3.6mm and said it is only slightly high. She recommended the nipt test and if that comes back high risk, she will do an amnio in 3 weeks.
She has also spoken to dd’s neurologist and the genetics team we saw before. Booked cardiac scan for 20 weeks and mri at 22. So it seems like she is really on it.
I am feeling slightly more hopeful today.....

[doadeer]

Oh poor you! Does it help to think of it as 3.5% chance?

[Robs20]

Thank you for your reassurance. We are moving house on Friday (couldn’t be worse bloody timing!!!!) so I will rest as much as I can tomorrow.
@doadeer so pleased it worked out ok for you. After everything we went through with dd1 it is really hard to be positive, but I keep reminding myself, 1 in 28 is still 27 chances it could be ok :)

[doadeer]

I had an NT of 4.7 and my baby was totally fine we had CVS - he's 10 months now. It's a horrible time I feel so sorry for you x

[Mummylanie3]

@robs20 I took my friend in with me as I'm a single parent but she was amazing so was my consultant and midwife I didn't look so didn't see the size of anything I think with CVS they numb the area first with amnio they don't I did get a sharp stabbing pain when they inserted needle lasted about 5 seconds the whole procedure took less then 3 mins but everyone is different some people don't feel a thing and once needle was in ifelt fine I would say take someone in just to hold it hand and look at focus on them not what's happening but you will be fine it's the waiting for results that was worse I was driving myself mad but first lot was in 4 days later hope it all goes well for you just think it will be over with in a matter of minutes they spend more time scanning and setting up then actually doing it xx

[cattaxi]

@Robs20 when I had my cvs they said they have more problems with partners fainting than the women!
I really didn’t think it was as bad as that. The needle is very big. It only takes a few minutes, and you honestly barely feel it. I had some period type pain for about 24 hours after, but nothing major. I did rest up in bed as they advised. My consultant was lovely & calm & explained everything as he did it.
Hopefully you will have a similarly positive experience.

[Robs20]

@cattaxi and @Mummylanie3 thank you! I went to bed last night assuming the worst, but I have a glimmer of hope now. I am so glad to hear both of your amnios came back ok.
I am nervous about the procedure. DH is a total wimp and faints at the sight of a normal needle so I will be there alone. Is it really ok or should I prepare myself?

[Mummylanie3]

I had a nt of 4.1 and a 1 in 25 chance had amnio last week and results came back Thursday all clear just have a heart scan on 4th now hope everything goes well for you