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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

High nuchal translucency - worried

20 replies

Sunshine28 · 24/09/2010 16:24

I am 28 yrs old and pregnant for the first time. My partner and I went off to get the 12 week scan yesterday, only to be told afterwards that the baby has a higher than normal nuchul translucency of 3.5mm. I am extremely worried about this but have to wait until Monday to get proper stats once they have blood test reults. I have been provisionally booked in for a CVS on Tuesday which will hopefully be cancelled if stats go well. Does anyone have any similar experiences of high nuchal translucency? Am feeling sick with worry so any reassurance would be much appreciated :)

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sunfunshine · 24/09/2010 17:02

Hi Sunshine

I'm sure there a more regular posters on here who might know more but I had a similar thing and worried myself silly, then decided to go for the full amnio because I'm 37 and just wanted to know. It was all alright in the end and the results were fine but having all the tests on offer made me feel a lot better but I'm the kind of person who HAS to know.

I would recommend that you do lots of research and talk to the hospital to get all the info you can - it's highly likely it's all fine but I know its the worry that get to you and you can't relax.

Good luck - really hope its okay for you

whizzymummy · 24/09/2010 17:27

Hi sunshine

When I was pregnant with my son, also aged 28, he had the exact same measurement. I was totally freaked out too. At the time they didn't do the combined tests with blood so they recommended we go for the CVS - I didn't want to wait for the amnio which was not possible until 16 weeks. However at the time they told me that the nasal bone was clearly visible which was a good sign. Did they say anything about that? Our results were an all clear but it was a very stressful time and I really sympathise with how you must feel but do try to wait for the blood test results. I loose track of how many people I know who have had a similar result now.

We unfortunately did have a problem with our next pregnancy which was discovered to be Turners Syndrome :(. I don't want this to stress you out - The only reason I mention it is because pregnancies since have been SO stressful at the nuchal scan. Our DD was fine but the sonographer we spoke to with our current pregnancy a couple of weeks ago said these days they would say 3.5mm is not always as bad as you think (can't believe in 5 years things have moved on so much!) - she said it is at the high end of normal but she quite clearly said normal. (We had a long conversation with her about previous pregnancies and scans and she chatted as she scanned us.)

Turns out our DS was a big baby weighing 9lb 6 oz at 38 weeks and a HUGE head! Best guess of the paediatrician was that may have had something to do with it though I am sure there is no science behind it.

Store up all your questions and write them down then try to find someone to talk to on Monday when you have the blood results.
If you can afford it you could also get a second opinion privately if you feel the need - it is what we did in the end with our DS and that's when we were told they thought the result would be fine as the nasal bone was visible.

If you do have the CVS done that is also the time to ask more questions as you will have a much more experienced person doing the CVS than the first scan.

My only further comment would be that if the bloods provide a good result and they don't want to do the CVS then maybe anyway ask to speak to someone about the results - I can see that being just as stressful if you are anything like me you would probably then worry yourself until the 20 week anomoly scan!

Good luck, am crossing fingers for you as I know it's a long wait over the weekend but try to stay positive xx

Sunshine28 · 24/09/2010 17:40

Thank you both for your kind words - it has really put my mind at ease. Of course I am still apprehensive, but think that it is probably a good thing to worry to some degree. Hearing other people's experiences like yours definitely gives me some comfort :)

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whizzymummy · 24/09/2010 17:43

Glad could help :)

Try to distract yourself best you can this weekend - Take it from me, I've been on bed rest for nearly 4 weeks now (hence my keen MNetting!) and chick flicks and chocolate help :)

azazello · 24/09/2010 17:46

Please try not to worry. My measurement with DD was 3.2mm. She is absolutely fine. It ups the risk (and that only slightly). It doesn't mean there is anything wrong.

AbiAbi · 24/09/2010 17:52

Hi Sunshine Smile

I'm 26 and got a combined bloods / nuchal fold result of 1:65 for Downs. I was beyond devastated when the midwfie called us, as I (naively) assumed I was far too young for there to be any problems like that Blush

We went to see the Consultant the next day, who explained CVS and amnio to us, and left us to make our choice. We, for very personal reasons decided not to go ahead with either test, and just wait and see instead. But I have to stress that that was based on our circumstances and personal experiences - no one can make that decision for you and your DP.

What I would advise is that you consider having a private scan + bloods done, so they can check thoroughly for soft markers. I am now 31+6 and our 20 week scan showed no soft markers, so they;ve reduced our odds to 1:120, although obviously thats still not low enough for me Smile

Try not to worry too much, Monday should hopefully throw some light on the situation (but I KNOW how pointless it is having someone say "Don't worry" in this situation) Theres a fab website/phoneline - ARC I think it is? Let me google...

AbiAbi · 24/09/2010 17:53

Aha - ARC

HTH [Smile]

FloraPost · 25/09/2010 12:31

We had high nuchal translucency and high HCG at 12 weeks. 2 scans later (an extra one at 16 weeks because high nuchal translucency + high HCG can indicate heart problems; then the usual 20 weeks) everything is absolutely fine. I hope yours is too, good luck!

Sunshine28 · 25/09/2010 20:00

Thanks ladies - had an appointment at private clinic today for further testing and things aren't looking good. The doctor couldn't see a nasal bone and apparently spotted reverse blood flow in the liver. Apparently we have a 1 in 2 chance. Am devastated! Have provisional booking for CVS on Tuesday though I know that it is all looking pretty hopeless. Have any of your had a CVS before? What is it like? I hope that I will be able to pay extra to get the results in 2/3 working days but am not sure if this is an option - it will be taking place at Harris Brithright Centre in Kings.

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PosieParker · 25/09/2010 20:03

Ah, my nuchal was high baby number two, 5.5cm i think. CVS is a large needle that doesn't hurt too much and doesn't take too long. It's a ling time ago for me as DS2 is a healthy and bright 7 year old.

I really hope everything goes well.

DuelingFanjo · 25/09/2010 20:10

High Sunshine, have you had the blood tests - these should have been taken at the same time as the Nuchal scan?

My SIL recently had her 12 week scan and was told that she had a high nuchal transucency of 4mm yet when she had the private proper nuchal scan with bloods was told the transulucancy was only about 1.8mm.

If you haven't had the bloods and scan at the same time by a properly qualified sonogropher then be cautious. My SIL's results came back very good from teh private scan and she decided not to have any more testing done (Amnio/CVS) - the private sonogorpher told her that the NHS person should never have been doing the scan alone.

Also - I had 3.5 at my private scan and a 1:80 chance after bloods but an Amnio showed everything was fine.

DuelingFanjo · 25/09/2010 20:10

hi not High! sorry.

prettysunset · 25/09/2010 22:06

Hey Sunshine, try not to worry. I'm a Sonographer and we see lots of 'high' NT's be 'just one of those things', bloods and age all need to be considered but I've known high NT's to be as a consequence of Mum having a virus of time of scan with no untoward outcome for baby and even just a high NT as'one of those things', with again no untoward outcome.
DuelingFanjo. FYI Sonographers (private or otherwise) are not allowed to perform NT scans unless they are accredited by the FMF or similar. We are all trained to the same high standard- 3 years Radiography degree (sometimes Midwifery) then 1-3 years post grad (depending on the number of disciplines specialised in) in Ultrasound. I the NHS we are all 'properly qualified'. Interestingly though in the 'private sector' not all 'Sonographers' are fully qualified- sadly this discipline has never been properly governed and in the private sector any old Tom Dick or Harry can buy themselves a machine ala To Cruise and have an Aps Specialit give them a crash course...
What I find interesting on all these links is that it is always presumed that if an NT is first measured high and then subsequently measured low that the initial (high)measurement was inaccurate and not that the second (low) measurement was undermeasured?! We need to remember that the NT like the Trple Test is 'screening' so there will always be false positives and negatives...Xx

DuelingFanjo · 25/09/2010 22:38

Sorry to offend Andyflo.

I am confused though. My SIl went for her regular NHS 12 weeks scan where the nuchal was measured even though the NHS here don't offer the Nuchal scan. She was told that her nuchal measurement was 'the highest seen all year' and they immediately booked her in for a CVS despite the fact that she told them she had already booked an appointment a couple of days later to have the full nuchal screening privately. They tried to persuade her not to, saying they would do blood tests another day and there was no point her doing the private scan and blood tests.

The private clinic here is run by a specialist who also works for the NHS doing Amnios (he did mine) and it was he who told my SIL that they really should not have done the nuchal measurement for her and certainly shouldn;t have said what they had about thickness being the highest they had seen all year.

I wonder why the two measurements were so different even though they were done 2 - 3 days apart? Doesn't that sound a bit strange to you? They wanted her to go ahead with a CVS despite the fact that she was planning on having the full bloods and scan test in a couple of days - which incidentally gave her a risk of 1 in 14000.

whizzymummy · 25/09/2010 22:42

Hi Sunshine, just wanted to pop in and give you lots of hugs {{{hugs }}} - am really hoping the results will show nothing is wrong.
Don't worry about the CVS, it is like PosieParker said a long needle but I have had it done twice and it was not much more than just being uncomfortable and over quickly. They sometimes then ask you sit down in a room somewhere quietly for 1/2 hour or so before you go anywhere.
Good luck xx

prettysunset · 25/09/2010 23:19

Sound very strange. Some centres who don't yet offer NT screening on the NHS will measure a 'subjectively high looking NT' at scan as this is an abnormality in itself and indeed where I work we counsel women who opt of of NT screenng and want solely to have a dating scan that if the NT 'looks large' that the Sonographer is obliged to measure and report it...
4mm is by no means enormous...seen much larger but is outside of the 'sigh of relief' range. Not a clue...odd case all round. Why did SIL choose to have NHS and Privat scans- hasn't half caused a pickle...! and of course we're back to he assumption that the private measurement is the correct one...In any case, hope fab outcome for all involved!Xx

DuelingFanjo · 26/09/2010 00:31

well... when she went for the NHS scan she was just expecting to have the usual 12 week dating scan that they booked her in for. Not expecting the Nuchal fold to be a part of that at all. She'd booked the private scan herself independently because of her age as she knew the NHS didn't do it here, so it was quite a shock when they started to talk about thick folds etc.

I did the same - boooked my own uchal privately, but was at a different NHS hospital for my 12 week dating scan where they only did the dating part and I declined the other blood tests offered later because by then I had already decided on an Amnio based upon my private nuchal results.

Apologies to Sunshine for th hijack and I hope that you are OK and that you get good results from the CVS. As far as I know the results do come back quickly.

Sunshine28 · 26/09/2010 10:35

Thanks everyone - I will let you know how it goes. Its really nice to have comments from all of you during these hard times. Hope all goes well for your SIL Dueling and thank whizzymummy for the hugs!

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AbiAbi · 26/09/2010 11:14

Sunshine I'm so sorry the test results weren't better.

As well as ARC there is a brilliant section on MN called 'antenatal tests / choices' and the ladies there were really helpful when we got our results.

DuelingFanjo · 26/09/2010 11:48

Sunshine, just to let you know that SIL used ARC and found them to be really helpful.

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