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Pregnancy

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Original poster

Nuchal fold scan

119 replies

Hanzym · 03/12/2013 18:38

Hi, we went for our scan yesterday and got an NT of of 5.5, we are waiting for the blood results but I can't help but think the worst, is anyone else going through this or have any stories about it?
Thank you from a very worried first time (hopefully) mum to be xxx

OP posts:

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Oddsocksrus · 03/12/2013 18:49

There are far more false positives than actual on conditions diagnosed.
Keep calm, there are loads more tests that will inform the results and give you more information.

For us this was a 1:2 downs and 1:36 Edwards syndrome result after bloods. Downs not a problem, Edwards very much so.
We opted for a cvs at kings which is the placenta sample rather than amniotic fluid, this was done at 13 weeks. We felt this was best to go for in every way as I'd have completely lost the plot if I'd had to wait and if the results had shown Edwards for sure then earlier the better really. It was arranged quickly done with the least fuss and an enormous amount of support and information and we were well supported.

I'm sitting here listening to a very normal three year old tantruming at her dad about bedtime . Apart from her will of steel and attitude there is nothing in the slightest bit wrong with her

Original poster

Hanzym · 03/12/2013 18:56

Thank you for that, there does seem to be a lot of positive stories, it's just the waiting that's hard! I am 13 weeks today so worried it might be too late for me to have CVS and have to wait longer for the amniocentesis,

OP posts:

SaggyOldClothCatPuss · 03/12/2013 19:06

I had a CVS at UCLH. My local hospital told me I'd need to wait for an amnio. When I got to UCLH they told me that a CVS can be done at any stage. When I queried this with the original midwife I was told it's because there is a slim chance of CVS needing to be repeated. TBH, although I know there is a very slim chance of MC with either procedure, having had odds of 1:5 for Downs id rather have had CVS done straight away and then repeated if necessary. I'd have still got my results back before the initial appointment. As it turned out, I wasnt ripe for amnio anyway!
There is also the Harmony Test, which is non invasive, but the results take 2 weeks. I seriously couldn't have waited that long, and it costs several hundred pounds.

Original poster

Hanzym · 03/12/2013 21:15

What was your outcome saggyoldclothcatpuss?

OP posts:

SaggyOldClothCatPuss · 03/12/2013 21:21

My outcome was positive for Downs. She is due in march.

AnyCrunchyCarrotFucker · 03/12/2013 22:49

I had a 4.6mm nuchal, and a 1:3 for downs. I eventually had an amino at 16 weeks (curiosity from DH only) which was negative, and my little boy is 2.5 now and chromosomally and developmentally normal.

You will definately come out high risk, and probably v high risk with that nuchal, but my DS is normal, and no one understands why he had such a high nuchal. It can just be one of those things.

All the best x

CrispyFB · 04/12/2013 00:24

Yes, sometimes babies have high nuchals for other reasons (some apparent - issues with drainage somewhere, am not enough of an expert to recall what or where!) and other times completely unexplained. And sometimes they have a chromosomal issue.

You will screen high risk, so be prepared for that, and take the time now to decide what you want to do so you don't feel pressured when you get the results. Look into the Harmony test for a non-invasive near-diagnostic option - it costs money right now (it will soon be on the NHS in some places) and it does take two weeks unlike CVS which takes a couple of days. Much depends on personal choice and attitude to risk e.g. how you would feel if your choice to do invasive testing caused problems - would you have a hard time coping with that or would you make the same choice again next time? Everybody is different.

I am sorry you have this worry. I had a 1 in 34 with DC3 (typical chromosomes) and a 1 in 5 with this pregnancy (Harmony says typical chromosomes) - both times driven by bad bloodwork rather than a terrible nuchal scan, but still scary.

For what it's worth, with a nuchal that high they will recommend you for a cardiac scan/fetal echo at 20 weeks if you keep the pregnancy.

MrsCocoa · 04/12/2013 00:45

Antenatal Results and Choices (ARC) www.arc-uk.org/ are a great source of non-directive advice, support and information.

Very best wishes.

Oddsocksrus · 04/12/2013 07:04

Me again, crispy is right sorry I should have remembered about the heart concerns.
A high nt score can be an indicator of cardio issues so our 20 week scan was at kings too. It is utterly magical, you can see every part of your baby's development from the lungs working to them having a pee. There is a detailed sectional scan through the body checking the development of all the major organs so you can see their system working in great detail. You can also see the flow of blood around the placenta. If there is the tiniest thing wrong this scan will show it, it is very reassuring and helps you prepare for what is to come.

I need knowledge in order to cope with change

Original poster

Hanzym · 04/12/2013 08:23

Thanks very much guys, I will get the results hopefully today or tomorrow, so I will keep you posted, other peoples stories help me but I guess it's just a waiting game at the moment :o/

OP posts:

AnyCrunchyCarrotFucker · 04/12/2013 08:34

I had to pay for a detailed cardio scan, the NHS wouldnt do it, despite the off the scale nuchal.

Yy to ARC, really good.

Prepare yourself now for a high number, I wasn't prepared at all!

lovelilies · 04/12/2013 08:56

we went through all this (now 34 weeks)
was 'high risk' so had CVS in Leeds it was a horrible time, so emotional I feel for you and your oh.
Phone call came and baby was chromosomally normal they could have told us the gender too if we'd wanted!
Still had fetal echocardiography as cardiac probs linked to thick nuchal fold, but that all ok too as far as they could tell.
Good luck, un mumsnetty hugs

Original poster

Hanzym · 04/12/2013 10:10

Results have come back in high risk so I'm off to the midwife to discuss my options

OP posts:

lovelilies · 04/12/2013 10:35

SaggyOldClothCatPuss · 04/12/2013 10:50

{{{hug}}} Hayze. High risk is still only that, a risk. Fingers crossed for you. x

SaggyOldClothCatPuss · 04/12/2013 10:51

Hanzym! Flipping autocorrect!

thoughtsbecomethings · 04/12/2013 10:54

Fingers crossed for you 12 years had the same situation. Not good news - and worst time of my life wishing you happier times.

ChicaMomma · 04/12/2013 11:44

Hanzym i've gone through all of this in my head, and if i were you i'd get the CVS immediately. It can be done from 11 weeks. That was my plan. I was convinced i'd end up high risk (i didnt thankfully) and had actually already booked the CVS for the following day. You need to eliminate it, the bloods will only amend the statistical risk for better of for worse- and they can VERY often overstate the abnormalities, plenty of people with 5.5 readings have perfectly fine babies. But you dont want to worry about it for the next 6 mths, so my advice FWIW woudl be to get the CVS as soon as you can. There's also harmony testing- but i know certainly here in dublin that is more expensive, slower turnaround (yet less invasive as just a blood test). I'd've gone with the CVS though myself.

Oddsocksrus · 04/12/2013 13:46

remember that these are risk scores at present.
many many un mumsnetty hugs
get booked in for the cvs and get a definitive answer
everything crossed for a good ultimate answer.

Original poster

Hanzym · 04/12/2013 15:04

So my bloods came back 1-2 risk for downs so highest possible risk, they can't do CVS as I'm too far gone, 13+1, so I'm booked in for amniocentesis next Thursday, midwife couldn't say much but gave the impression that I need to prepare for the worst! I guess I can still hope for the 50% that is still positive to stay a positive, feel a bit shell shocked! Thanks so much for all your support, it really helps me get through this to hear everyone's stories
Xxx

OP posts:

ChicaMomma · 04/12/2013 15:10

The bloods nearly always narrow the risk from what i've heard, i've rarely heard of them widening the chances anyway let's just say.. you still have the same chance of having a perfectly healthy baby. Best of luck xx

ETA- I know a few people who've had the amnio and say it's much less of an ordeal than they expected and over v quickly

applejacket · 04/12/2013 18:00

oh op how scary :(

i really hope time flies and you get the result you want. btw a friend in my antental group had a similar thing and after further investigations her baby is fine

WipsGlitter · 04/12/2013 18:03

I have a child with Downs. We found out after he was born. It's a big shock but we lead very 'normal' lives. My son is at mainstream nursery and we hope he will go to mainstream school. If there's anything you'd like to ask please do so.

Oddsocksrus · 04/12/2013 19:40

1:2 is the same as us, 50%

talk to Wips there are lots of very innacurate descriptions of Downs and have a look at the Downs society
www.downs-syndrome.org.uk/

SaggyOldClothCatPuss · 04/12/2013 23:04

Definitely talk to Wips. She's a gem. x

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