Nuchal fold test high risk result

[peanutpie]

I've just got back from my Nuchal fold test and I have been told I am currently high risk.

The test was 2.4 mm and has increased my risk from 1 in 183 (I'm 36) to being 1 in 35. I feel pretty wretched about it too be honest. I'm shocked at how much worse it's made my results.

I've had bloods done and I'll get the combined test results on Monday or Tuesday. Although the doctor indicated that it would be unlikely that the bloods would push me out of the high risk group. The nasal bone is there and other stuff appears normal apparently.

This feels particularly tough as I have only just had my third miscarriage and got pregnant straight away so I guess I was hoping that this would the start of the happy bit. Instead I feel I'm starting on another journey of terrible waiting and uncertainty.

Having babies can be so hard sometimes can't it!

[JodieO]

I've had 5 miscarriages and to be honest, I'd be happy to just be pregnant, regardless of nuchal results. Sorry if that sounds harsh. I hope everything works out well for you and your baby. Congratulations on your pregnancy btw

[PercyPigPie]

Hope you are OK peanut. Don't panic yet - there is still lots they can do to illuminate your risk (amnio, CVS etc). Try and keep calm for now - though it sounds impossible.

Sorry to hear about your previous miscarriages too.

[peanutpie]

Thanks Mudandmayhem. Not OK at all, I'm absolutely petrified. It's been difficult enough getting to this stage in being pregnant, but this feels like the stakes have been raised massively.

I'm going to try ringing the ARC people tomorrow as I think I'm going to need all the help I can get.

[thumbwitch]

peanut - not sure if this will help but a good friend of mine had a nuchal fold result that gave her a 1 in 20 risk of there being something wrong - she opted to have full CVS done, despite the 1% risk of MC, and discovered that she was having a little girl who, to all intents and purposes, was going to be fine. She was born 8w early (but that seems to be a family trait!) and 2 years on, is absolutely fine.

So - I hope that in your case you have as good an outcome. Remember that a 1 in 35 risk of there being something wrong still means that there is a 34 in 35 chance that your baby will be fine - that's greater than 97%. Have you any Rescue Remedy? take some if you have, get some and take some if you haven't and remember to breathe. Fingers crossed for your test results - I hope it's all good news for you now.

[shangrila]

Hi Peanutpie

I am sorry that you are in such a stressful situation, particularly so as you have had a tough time of it in the recent past. Your feelings and concerns are incredibly valid and in talking things through, mulling things over, you are helping yourself to deal with what is going on, whilst informing yourself at the same time.

Many women within this section have come away from the nuchal scan, concerned that it hasn't given them the result that they were hoping for. However, to get a full risk factor you will need to sit tight for those bloods. Easier said than done, I know. Also, 2.4mm is higher risk than your background age related risk, but I think it is just at a slightly higher end of the normal spectrum. It will vary too depending on the pregnancy's gestation and the skill of the sonographer. Great that everything else appears normal - a real positive. It's a good idea to talk this through with ARC. They are extremely well informed and non-judgemental.

Before you had the nuchal scan, did you decide what you would do, if further testing was suggested? As mudandmayhem and thumbwitch suggest, a CVS can be a next step, should you wish for a definitive result. Out of the blue, it can be a scary process to contemplate. And I'm sure that it isn't top of every pregnant woman's ideal 'to do' list. However, I have had three and, as long as you are in the safe hands of an experienced consultant, I would have no qualms about suggesting it as worthy of consideration. Or even an amnio, slightly later along, or full detailed ultrasound scans. There are many, many screening and diagnostic options.

Of course, you may get a good result early next week and feel that no further action is needed. I hope you do. But if your total risk factor doesn't set your mind to rest and you want to chat further, we'll be more than willing to listen and help. Very best wishes.

[babynumberthree]

I think your risk has been overestimated. I'm no expert but have just been through a similar experience of increased risk results and have read far and wide. Your background risk by age according to Barts and London website is 1:270. A nuchal fold result of 2.4 is still within the normal range as well although the high end of normal. You don't say how many weeks you are and that will influence the effect of the nuchal thickness on your risk factor. I have to say that I think your doctor has been overly negative.

I agree that you should wait until you have all the results to hand and your risk estimated from the official national database and not in a clinic. You could also consider a second opinion from an expert centre such as the FMC at Harley st if you are still under 13+6 weeks.

Hope this helps and good luck.

[peanutpie]

Thankyou so much for your kind responses, especially as they have come through the night. They have helped me emormously.

We had given some thought to what to do next and I would have the next set of tests. There is no way I will be able to cope with the uncertainty of a high risk result. I think that if the risk gets worse then I'll go for a CVS so I can get a conclusive result sooner. If the odds get better then I'm more prepared to wait for the amnio.

For the scan I was at 11 weeks and 6 days so I guess that means the nuchal fold measurement will be more of a concern than if I was later on unfortunately. It looked pretty big on the screen!

I have a son already. I was 33 when I had him and I was also closer to 13 weeks for the scan. That result was 2mm and risk factor improved from background to 1 in 800+. However it is giving me a little bit of comfort that nuchal fold measurement wasn't really tiny with him. When we had this test, the hospital only did nuchal measurement which is why I asked for only part of the result last night. I guess I can't help thinking that if this had happened a few years ago then 1 in 35 would have been our result.

The doctor who did the tests did say that the blood tests are unlikely to be so good that I will move out of high risk. Therefore I fully expect that I will be having diagnostic tests at some point in the future.

[Mishta]

Peanutpie,
Although I have had a DS pregnancy, the NT measurement was 5.6mm, and it was only when this was combined with 'bad' blood that I received a risk ratio.

I am now pregnant again, 38 weeks tomorrow, and the NT for this one was 3.0mm. They would not give my a risk factor based on this, but naturally I freaked. I didn't wait for the blood results - went straight for a CVS. When I got there for my CVS, they told me that in their opinion I had jumped the gun, as a measurement of 3.0mm without knowing what the bloods were, even with my history, meant nothing. The lady was even a bit annoyed with me; I have never felt happier to have someone annoyed with me or be accused of jumping the gun. They suggested I wait for the blood results, but that they would do the CVS if I insisted. As I had travelled a couple of hours for it, I eventually decided to just go ahead. Found out the next day that all was fine. Can I just stress, though if you do have CVS to rest afterwards, even if you feel good. I didn't, and I blame this for me spotting for almost a week later - turned out to be nothing, but quite a scary time all the same.

All the best

[busierbee]

Hello Peanut pie
Golly it is all so distressing isn't it?
I think too, like the others, that 2.4 isn't exceptionally high at all. And the indication of a nasal bone is a very, very good one. I have had two terminations for DS (heartbreaking wretched time) and with both babies there was no nasal bone present.
If you are near to London, there is an excellent clinic on Harley St called the Fetal Medecine Centre. We have suggested this to many women on this site who have had troubling results and they have been so reassured that they have not even had further testing. The man, Professor Nicolaides, is a guru of Nuchal measurement testing and pioneered the whole thing.
It may be just the thing to alleviate your confusion.
Good luck and do ask any questions at all - there is much expertise on this site from women with all sorts of experience.
hugs
Busier Bee

[busierbee]

Thumbwitch - I do like your advise.
Bee x

[peanutpie]

Just got the results of the blood test. It's now gone to a 1 in 5 risk. I feel totally in shock. We have a CVS booked for tomorrow morning so at least we'll know for certain very soon.

I don't feel very hopeful about the outcome as things seem to be getting worse and worse.

[helenlouisey]

Oh Peanutpie, I am so sorry. I have been through the same thing 6 weeks ago (but for T18 rather than T21 and my risk was 1:2), you do feel like you are living out your worst nightmare and can't actually believe that this is happening to you. I think I have spent most of the last month in a fog, you just get through it in auto pilot. Try and just take each day at a time and try and keep as busy as you can.

Do you know how quickly it will take the CVS results to come through, we paid for ours privately so got the results within 2 days.

I think the only thing that got me through was my DS, so try and focus on your little boy. They are a great distraction, and having him did make me realise what a little miracle he is.

Good luck

Have you thought about what you will do if the results from the CVS come back positive. My husband and I talked about it a lot before hand but I found it impossible to make a final decision until I had positive results, sadly we decided to terminate.

All the ladies on here are absolutely brilliant and will offer you lots of support whatever your decide and what the outcome is.

[Casserole]

Hi Peanut. I don't have any experience so really just stopping by to add solidarity. So sorry you're going through this and I hope the CVS brings better news. It's still only a 20% chance... 80% of better news then? Try and be gentle with yourself today, don't cross bridges that you don't have to just yet x

[inniu]

I hope your test goes well and that you are in the 80% who get good news.

[mowmi]

Dear peanutpie,

I'm so sorry you're going through this - I have been where you are and I know how hard it is.
I thought our risk was 1 in 9 when we opted for CVS it turns out it was actually 1 in 2.
I was the lucky one - our cvs came back with the result we were desperate for - have to say it was the best phone call I have ever taken!

The ladies on this thread were amazing - the support i found through this site helped enormously through those dark days.
Please try not to lose all hope - they'll be enough time for that if the result doesn't go your way.

Your NF isn't that bad at all - mine was 2.9 - I went for a private scan to get a second opinion (and get the combined results back quicker) with someone very experienced and he was adamant the baby was fine (as the others have said the nasal bone is very positive) he was convinced he would call me with better news once the blood results were known - they were bad and made the result worse.

All my whittering is my way of saying that even though things look bad there is hope you'll get some good news very soon.

Look after yourself.

x

[countrybump]

I hope your test goes well. Having had a CVS myself a few years back I know just how worried you must be. Just remember that there is absolutely nothing that you can do about it now other than wait for tests and results, so try to not think about it too much - really hard I know, but I remember getting so worked up about something that I just had no control over.

Good luck x

[busierbee]

Hang on in there Peanut sweetie.
There are lots of positive signs from your scan - in the end they are just odds you know.
Lots of women have been where you are and had a happy outcome.
We are here if you need to offload.
Bee xx

[thumbwitch]

Peanut, so sorry to hear things aren't looking up yet - but as casserole said, the odds are still in your favour so keep that in mind. I have everything crossed for you that the CVS comes out with a good result.

[Cantdothisagain]

Hi Peanut

hope it goes as well as can today. I have to say 2.4 doesnt sound that high to me. I had an 8.8 and an over 10mm nuchal fold with a baby with Turners syndrome. I really hope that your results come back clear. The chance is still higher that they will, than that they will not, but I do know how hard it is to imagine that.

Dont lose hope yet. Thinking of you.

[Casserole]

Been thinking of you today peanut. Hope it's gone ok.

[helenlouisey]

Hi Peanutpie, hope today has gone as well as it could have. Thinking of you.

[shangrila]

Hello Peanutpie

I'm sure you must feel drained after today's CVS. I hope it passed uneventfully for you and that they are able to get your results back to you quickly. Are you able to get a PCR (fast, partial) result? Do hope so.

With very best wishes for a good outcome.

[peanutpie]

Thanks for your messages, they've been really, really helpful. I had the CVS this morning which they seem to think went fine. It was pretty scary but it didn't hurt as much as I thought. I think I've been more uncomfortable over the day than I was in the actual procedure.

I have found out that I should get the results by the end of tomorrow rather than Thursday.

I'm probably preparing myself for the worst, which my friends reliably inform me is in my nature! I can honestly say that this is truly awful. I'm used to having to wait to see if I'm going to miscarry but to be honest, at the moment, this waiting and stressing is in a totally different league of awfulness.

Found myself wanting to go out and buy a little snow baby suit today and then realised I was saying to myself that, if I have to let the baby go then at least it won't be cold! Which totally set me off crying and feeling awful. I'm struggling to not think that 'I just know' that it is going to be bad. I think that's because that's what I'm used to thinking with miscarriages. I guess that in this situation I can't know, I can really only guess.

[Casserole]

Oh poor poor you. I can totally imagine the stressing and obsessing, I know I'd be the same.

Not the same at all but they thought my DS needed open heart surgery a few months ago - it transpired less than a week later that he didn't but in that week I cleared out every cupboard I owned!! Just couldn't sit still and be alone with my thoughts... is there a cupboard you can turn out, or a film you can watch, or go for a drive or something, and can you keep busy tomorrow?

Thinking of you.