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Original poster

High NT? (just had 4.7mm) — pls share your experiences

33 replies

bright0nmama · 10/10/2014 20:32

Hi everyone

It's my first ever post to Mumsnet. Just came back from our ultrasound (12+5) with an NT of 4.7mm. Have to say that sonographer and the screening midwife were both lovely (but crikey, those 'comforting' rooms with pictures of trees and boxes of tissues...). Combined results should be in early next week. I think we'll be likely to ask for a CVS.

I've spent the evening trying to research what this might mean, and there's some relief in statistics from the academic papers around, but somehow hearing personal stories of mums who've gone through this (whatever the outcome) is hugely reassuring—just knowing that people come through it.

I'm 33, with one DS (turning 4 in a couple of weeks). We had a MC before him, and I've always expected the worst with pregnancies as my mum had a terrible time (6 pregnancies, 4 births but one v premature and one with Downs and only made it to 9 months, so now only 2 children alive and well).

I know the next few days are just part of a waiting game, but any stories would be hugely helpful. Also, any advice on how you've talked about this with a toddler? We told our son about the pregnancy early on and he's been so excited about it. He was there at the scan too, and then got a bit confused when we looked a bit sad. I'm feeling hugely grateful for having him in our lives right now. He's one hell of a distraction.

Sorry for the long post!

OP posts:
HaggisNeepsTatties · 12/10/2014 08:54

Hi,

Sorry you're having to go through this.
I don't really have any words of reassurance other than to say we're going through the same right now. Had a reading of 4.2 at 11w5d which was 10 days ago. Expected to have to wait a week or so before getting results from combined but had a call from the maternity unit the next morning with an appointment that day to discuss our choices.
They offered us CVS there and then, or amino in a few weeks, both of which have a small risk of miscarriage but would give initial results within 3-4 days.
They also offered us the non invasive Harmony test privately (£400) which has no risk of miscarriage but which is 2 weeks wait as sample gets sent to California. It's still classed as a screening test as 99% accurate rather than 99.9% of cvs or amino.
We opted for the Harmony test as we've had previous miscarriages and didn't want to take that risk. So in the middle of that wait for results now.
We'll also have a very detailed scan at 19 weeks ( and probably additional scans later) to look for other defects that there seems to be a higher risk of with high NT readings. So it's going to be a long couple of months before we know if everything's ok.
I posted a similar thread to yours last week and had several responses from people who had high readings but everything was fine. It was reassuring to know that in the majority of cass everything is fine! I'm holding onto that and staying away from Google!

Original poster
bright0nmama · 14/10/2014 15:28

Thanks so much for your response. I've just had the combined test results back and apparently there's a 1 in 14 chance of Downs. So I'm booked in for a CVS tomorrow morning. I feel confident that the doctor does them regularly and now just need to know for definite either way. I'd been bracing myself for a 1 in 4 chance so I'm weirdly feeling quite calm. Just crossing my fingers that I'll get the results by Friday.

OP posts:
Original poster
bright0nmama · 16/10/2014 21:08

A quick update should anyone else chance upon this thread.. we just had the first set of results from the CVS back (the day after it was taken) and we've got the all clear—no Downs, Edwards or Patau. More tests to come, but a great sign. I know I was grateful reading other people's stories, so hope this will be a hope-filling one to others too.

OP posts:
MummytoLoganDarcy · 22/10/2014 11:37

I have just read this and it has given me a little hope, we had a high ready yesterday and waiting for harmony to come back. I'm glad you had good news x

Original poster
bright0nmama · 22/10/2014 12:40

Oooh I hope v much that you will have good news too. What I've discovered from here (and elsewhere) is that whatever the news, there is a huge amount of support among women who've been through this stuff, and a huge amount of positive emotions and resilience, especially amongst those who don't have the outcome they were hoping for. I very much hope that whatever the news, it will end up, one way or another, being positive.

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MummytoLoganDarcy · 22/10/2014 12:48

Thank you, it really helps talking to ladies who have been or have been in similar situations. Can I ask if they have booked you for any other checks now? They mentioned to me checking the heart if all the other results are clear.

Original poster
bright0nmama · 22/10/2014 13:08

Yes. I've got a heart scan booked at St Thomas' hospital in London on Monday. And then we are still waiting on all the other results from the CVS too. So fingers crossed for a while longer.

OP posts:
MummytoLoganDarcy · 22/10/2014 14:16

Fingers crossed for you for all your future tests. Please keep me up to date if you have time x

Original poster
bright0nmama · 22/10/2014 14:32

Likewise!

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SaggyAndLucy · 22/10/2014 23:28

Hey. I just wanted to pop in and say hi. Smile
My DD was born in march with DS, and a serious heart defect. (cavsd)
Its very daunting to find out that they have a heart problem, especially antenatally, but there are some VERY talented doctors out there, and many many positive stories. Lucy had open heart surgery at 12 weeks, and it was HELL! BUT, she is fixed. Fine. Thriving in fact.
IF you end up there, hang on. xx

notinagreatplace · 23/10/2014 08:24

Thinking of you.

Essentially, the full CVS will look at other chromosome abnormalities. If those are excluded, they will look at the heart. If those are excluded, they will do detailed scans to see if there are any signs of a genetic syndrome.

Overall, your chances of a completely healthy baby are a little better than 50:50 with a nuchal that high (the NHS tends only to give you the odds for Down's which isn't all that helpful given that a high nuchal is a marker for other issues as well) but, now that you've had the all clear for the most common trisomies, your odds are quite a lot better. Also, as Saggy says, many many heart problems are operable now and have a very good survival rate and, similarly, some genetic syndromes are relatively mild.

Original poster
bright0nmama · 12/11/2014 13:29

Just wanted to update that the initial heart scan came back normal, so all news so far has been good news. However still can't quite stop worrying until we have the anomaly scan (in 3 weeks) and then another heart scan the week after. I saw my midwife yesterday who was deeply unreassuring, so got all panicked about all other possible outcomes that there could be for this little bean. Luckily I had the good mind to call the lovely midwife at the hospital who deals with all parents with abnormal results, and she was a lot more reassuring. Not a straightforward process, but at least we'll get to know whatever we'll get to know in the next few weeks. Now I just have to keep my mind distracted. And it's hard!

OP posts:
fb1978 · 01/12/2014 12:49

Hi op

just wondering how you are doing?

Original poster
bright0nmama · 03/12/2014 11:39

Quick update: just had our 20 week anomaly scan this morning and the baby looks normal. I cried! They did detailed checks of the mouth, head, kidneys, diaphragm etc, but not that much re the heart as we've got another detailed one booked at St Thomas' next week. Then, fingers crossed, I can get to start thinking about where we'll put a cot...

OP posts:
Tranquilitybaby · 04/12/2014 16:26

So pleased for you. Hope you can relax and enjoy your pregnancy now x

Bettyblue123 · 06/12/2014 10:52

Hi
We're right in the middle of this with an NT of 4.4mm and risk of 1:5. Going for amnio this coming Friday. Honestly don't know how I'll get to then and don't know how I'll be able to take the call with results etc! In quite a low place as our fetal midwives have been very negative with us despite us still having numbers on our side! (Just) I feel sure we're going to be 'the one'! These stories are great to read! Need all the help we can get just now!

5amisnotmorning · 06/12/2014 13:07

Bright, we have had very high chromosome abnormality probabilities with our two children - a one in 2 and one in 15. They are both fine but my first words with both of them when born was 'ate they ok'. It seems like there must be something 'wrong' but in truth there may not be. These scans and tests can be so vital to save lives but can also put people through hell.
And I have seen pictures of Saggy's Lucy and she is both amazing and gorgeous

Original poster
bright0nmama · 07/12/2014 17:32

Hi bettyblue hope you've managed to hold up through the weekend. It's so horrible waiting. Have you called the arc helpline?

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Original poster
bright0nmama · 07/12/2014 17:35

Eek! Posted early by mistake. Their website is www.arc-uk.org. Super nice. I had a five day wait, so not as long as you, but spent my time doing things that made me happy -- went to a comedy show, did a lot of knitting, watched feel good movies. I really hope all is okay. Will be thinking of you.

OP posts:
Tranquilitybaby · 10/12/2014 22:46

How are you bettyblue, any news? X

Bettyblue123 · 10/12/2014 23:04

Hi
Amnio is Friday. Am totally and utterly at rock bottom and expect in bad news! Got routine midwife 16 week appt tommorow and I'll probably cry all the way through! Thanks for asking xxx

Tranquilitybaby · 10/12/2014 23:17

Aww bless you. Thinking of you and hope the results are more positive than you fear x

DrLizAsher · 11/12/2014 07:21

betty so sorry to hear you are so low. It's an awful time. I didn't do any routine appointments while we were waiting to find out what was going on, including missing the 16 week appointment. If you don't feel up to it I'm sure you can cancel/postpone... they're mostly about checking in and you'll be having more than enough contact with the hospital. Thinking of you over the next couple of days.

Bettyblue123 · 12/12/2014 09:23

Just getting ready to leave for the hospital! Can't believe this is happening! Scared of it being really painful too.

layla050889 · 12/12/2014 14:26

Good luck!! xx I had CVS test yesterday as NT was 4.1 at 13w2 (remeasured at 3.7 by consultant yesterday). Other than that the baby looked healthy, all internal organs, nasal bone and limbs present! I'm terrified to get a bad result so just been praying and trying to think positive. The consultant said after that she didn't think it would be DS, but I don't want to get too hopeful with a risk of 1:15. All horrible to go through when all you want is to be excited about your pregnancy x