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Pregnancy

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

Nuchal Fold 3.2 at age 39

15 replies

perfectstorm · 04/09/2013 13:59

Feeling a bit glum today. My NT measurement is 3.2 which is right at the top end of the range. In fact it's 99th centile. Given I am also 39, it's not good news. And the Fetal Medical Centre have told me I need to get a heart scan from a specialist now, as even if the Down is eliminated it can still be an indication of serious heart problems.

Can anyone who's had similar measurements at a similarish age talk to me? Whatever the outcome?

OP posts:
ZeroTolerance · 04/09/2013 20:44

I can't offer any advice I'm afraid but bumping this for you in the hope that someone can.

Strix · 04/09/2013 20:54

This might be helpful. I am Persnickety. I was ever so stressed. But it all worked out DS2 is now 2 1/2, bloody terror perfectly normal.

www.mumsnet.com/Talk/antenatal_tests_choices/984131-Would-you-have-a-CVS-if-your-risk-was/AllOnOnePage

onceipopicantstop · 04/09/2013 21:01

Hi did they mention having the Harmony test as a more accurare non-invasive test? If you go onto the antenatal screening/tests forum there is a long thread about it - and in the same thread lots of stories of a high NT measurement, and a normal baby. Hope it all works out for you, it's very stressful waiting for results and tests.

CrispyFB · 04/09/2013 21:31

Sorry to hear you're on the NT screening rollercoaster

Did you get any odds? I second Harmony.. not cheap (£400 now I think) but then nor is a CVS unless you get it on the NHS. And you don't then get to choose who does it and the outcomes can be very variable depending on the experience of the person doing it!

I waited it out for a 1 in 34 (in my case normal nuchal fold, crap bloods, DS typical chromosomes as it turned out) - during that time I saw lots of people come and go.. 3.2 honestly is not bad in the grand scheme of things even if it's top end. What was your bloodwork like?

perfectstorm · 05/09/2013 18:36

The NHS odds still haven't reached me. I'm so frustrated as the 3.2 measurement plus my age are poor odds, and they only take 2 bloods (of a potential 4) in my Trust to calculate against. I'm not entirely happy to just rely on those bloods as against the other factors.

I have thought of having a Harmony test done, but the problem is I am already 14 w 4 d. If I waited 2 weeks for the results to return from the States I'd be at least 17 weeks, and though I am very pro-choice, there's no way I could terminate at 18+ weeks which is what we'd be talking, unless the baby was so disabled they would have no quality of life at all. I just couldn't do it at that stage, and DH is very clear that he would struggle immensely with an intellectually disabled child - obviously he knows there are no guarantees in life and any child can be or become so - but he doesn't have the same issues with a physical problem. I think we're going to have to bite the bullet and get the CVS done asap, and then pay for the FMC's 20 week abnormality scan to check for major heart problems.

Last time round my odds were those of an 18 year old. The FMC told me they rarely saw odds that fantastic. I think that makes this a bigger shock, which is daft, I know, given my age.

Thanks so much for taking the time to help me, and to ZeroTolerance for being kind enough to bump. MN can be so amazing at times.

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CrispyFB · 05/09/2013 21:34

If you're going to the FMC for your CVS then you already know you'd be in the best possible hands. I can understand about the two week wait for results too, taking you that much further on.

Lots of luck - let us know how it goes.

Strix · 06/09/2013 15:37

Have you read my thread? My position was very much the same as yours and was one of the main reasons I went for a CVS (at FMC). I felt that a termination later was not on the cards. I needed to know NOW. And the fastest way to clear results that were more than just statistical probabilities was a CVS. The results came back all clear, and that enabled me to relax and enjoy the rest of the pregnancy. The CVS was the right thing to do.

Feel free to send me a private message if you want to chat offline. I remember how ver stressed and confused I was. Going for the CVS was a very difficult decision. Thank God I didn't have a more more difficult one to follow.

Strix/Persnickety

x0gawjus0x · 06/09/2013 15:53

You can have the harmony test in london and results same say no need to send off to US x

perfectstorm · 06/09/2013 22:49

x0gawjus0x can I ask where you had yours done? My understanding is that there isn't a lab equipped in this country yet. The FMC is world-leading, so if there were a local option I would expect them to take it, yet when I spoke to them today they confirmed it was a 2 week wait for the US lab results. If there's a same day option, though, that would be amazing. I'd book it like a shot.

My blood results are back, and they are very positive indeed which improves my odds to 1 in 380. That being so, a scan at 19 weeks seems the safest option. If I had a CVS and miscarried, and the results showed the baby was fine, that would be pretty horrendous, too. DH commented that you'd get those odds on Gordon Brown being PM again and they were ones he was willing to gamble on! It just feels so weird, when last time our odds were over 10,000/1, to be pleased with less than 400. But my DS' teacher told me today that her dd has a nuchal result higher than 4, which did rather put my fears into perspective. I'm on the 99th centile end of normal range, but that is still normal range.

I just wish our local hospital had a combined test that included soft markers such as the nasal bone. Given 60% of Down's cases don't have one at that stage, you'd have expected them to cover that. But the least invasive and safest option does seem the major anomaly scan at the FMC at 19 weeks, which is the earliest they can usefully do it. They are so thorough and have such amazing equipment there that I don't feel any anxiety over trusting their judgement at that stage.

I'm going to try not to think about it, and hope the gamble is in the right direction.

Thanks again for all your help. It is so very much appreciated.

OP posts:
Wickedgirl · 07/09/2013 09:43

this says that you are probably fine and that anything less than 3.5 is fine

I also had an nt reading of 3.2 at FMC but because my harmony testing was clear, they told me it was probably nothing to worry about. I am 38 and currently 35+3 with baby 4.

this seems to suggest that the NHS aren't worried until the measurement is higher than 3.5

I hope everything works out for you

Cheerymum · 07/09/2013 10:03

Perfectstorm when I was pregnant with my first, the NT was almost 6 (5.8 I think!) ie totally off the charts. This was picked up on our dating scan. I was 35, and it was 4 weeks before our wedding. I pressed the consultant for a guestimate of the odds for chromosome problems and heart problems, and we were quoted 70% chance of Downs and, if negative, 30-40% chance of major heart defect.
The NHS was brilliant, we had a CVS 2 days later at a tertiary centre (on advice, we didn't wait for combined screening results). The results were normal.
We then had to wait a couple of weeks for the baby to grow, and they timed a detailed heart scan to be 10 days before our wedding. It was still only 14 weeks, so they had to do the scan transvaginally, and with caveats that they may not pick up more minor issues, but the scan was also fine, as was a detailed anomaly/cardiac scan at 20 weeks.
Now we have a gorgeous healthy 2 year old (as well as identical twins due any day, but that's another story!!) All very stressful, but we were lucky enough to have a happy outcome despite a much worse NT (and, I would imagine, much MUCH poorer odds than you are facing). So it can all be ok, though I appreciate that not everyone is as lucky as we were.
Decisions around invasive testing and what to do with the results are so so difficult, and I know how it feels to be in your shoes. Please feel free to PM me if you think that would help. Thanks

PS I think the FMC are fab, and if our NHS treatment hadn't been so flawless, that's definitely where we would have gone, and I found their website fantastic and helpful too.

Cheerymum · 07/09/2013 10:10

Just realised you have odds of 1 in 380 for Downs - somehow missed the last page of replies including your last update - that's great!! Personally I wouldn't have considered CVS under those circs either! I think your approach of forget about it as best you can for now, and wait for your anomaly scan sounds eminently sensible. Can't get better than the FMC as a place to have it done. Wishing you a healthy pregnancy, and less stressful one as it progresses!!

perfectstorm · 04/10/2013 21:20

Well, being relaxed didn't work so well and we did go for the Harmony in the end. Results are clear (less than 1 in 10,00) so I am really, really relieved. And we had a scan at the FMC which showed the heart is fine too.

Thanks so much for the kindness, understanding and sharing of your own situations. It was more helpful than I can say. Again: MN can be an amazing place. Flowers

OP posts:
TooTryHard · 04/10/2013 21:38

Great news :). Enjoy your bump.

perfectstorm · 04/10/2013 21:51

Thank you! :)

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