Nuchal fold problem detected on my dating scan

[junebug8]

I had my first (dating) scan on Monday at 11+5 and the midwife picked up a problem with the amount of fluid behind the Nuchal Fold, it measured at 4.2mm. I've got another scan Thursday in the fetal medicine unit at St Michael's Bristol (I live in Cardiff but Cardiff couldn't arrange the extra scan till next week), and depending on the results of that will then have CVS done. Everyone I spoke to at the hospital was helpful and kind but I feel somwhere between overloaded with information and totally lost. They've told me it could be a chromosomal problem, or a heart defect or even a virus. They said as well that it might be nothing, but it is more likely to be a problem than not.

I had some blood tests done as well, but to be honest I can't remember what they were even for!

I saw my little baby wriggling around like mad and waving at us and now I have an envelope of scan pictures that I can't bring myself to look at. Yes, it could be fine, but it could also be something awful that would mean I might not be able to carry on with my pregnancy.

I'm in a bit of a sad way and I know there's a lot of ladies here who have gone through a similar thing so I suppose I'm just after a bit of advice/general hand holding really. :(

I'm so sorry you're going through this junebug. It's a very, very difficult time for you' and news like this can tilt your whole world sideways.

At least you have your scan tomorrow, and hopefully things will be slightly clearer after that.

There have been women on these threads who have had a high nuchal measurement, and gone on to have perfectly healthy babies. I truly hope that this is also the case for you.

On the other hand, I suppose it is human nature to try to prepare yourself in the event of bad news.

I'm sorry I'm offering no gems of wisdom here, just I guess the obvious (but useful!) advice to try and stay busy, watch mindless TV or DVD boxsets, and hopefully the waiting will pass a little quicker.

Thinking of you. x

Just saw you posted on that other thread - now feel guilty that I've been unnecessarily gloomy in my first post.

Of course the nuchal fold must be looked at in conjunction with your bloods, to give a more accurate picture. By itself it is not particularly accurate as a predictor of problems.

As you have seen, many women with high measurements have been fine.

And even if you do decide to go for CVS, it really isn't too dreadful, and can give you massive reassurance for the rest of your pregnancy.

Good luck for tomorrow.

Thank you and don't worry about being gloomy! It's quite hard to be positive even though I haven't even had the tests yet, but this website has been brilliant so far, so muchiformation and so many helpful people.

If it isn't too personal a question, have you had CVS done? I'm partly concerned it might hurt afterwards(such a wimp!) and also how long it takes? x

Tbh, I haven't had CVS (have had three amnios tho), and rather cavalierly am basing my opinion on that of other womens' experience on these threads. I actually felt that the poster on the other thread might have scared you unnecessarily by her comment!

As far as I'm aware, it is a quick procedure, depending I think on position of the placenta, and not reckoned to be too painful afterwards.
Like amnio, I think the important thing is to take it easy afterwards.

I now wish I'd gone for CVS rather than amnio with my last pregnancy, which sadly ended in a termination after Trisomy 21 was diagnosed (I'd had no prior screening).

It is hugely helpful to have information early on in pregnancy, whatever you decide to do with that knowledge. You're probably in the most difficult position of all , having been alerted to a potential problem, but without any definite news either way, and you have all my sympathies. Uncertainty is hell.

I hope you get some reassurance tomorrow, and if you decide to go ahead with the CVS, take some comfort from the fact that you will have some answers to the treadmill of questions which I'm sure are tormenting you at the moment.

Do you have any other children, or is this your first pregnancy? x

Hi Junebug

I have very recently been just where you are at the moment and I really, really sympathise, it's horrible.
Our baby had a NT of 5mm at 11+6 and we were prepared for the very worst. They take your bloods to give you a combined risk of abnormalities- ours would have been 1:6 for Down's just with the NF measurement, but my bloods bought it down to 1:80. Still a very frightening figure, especially when they refer to this as 'high risk'.

We went back for a repeat scan a week later to rule out some other problems with the babies abdomen and were planning to have CVS then. HOwever, when we worked out that our risk of DS was 1.3% and the risk of miscarriage from the CVS was around 1% we decided to wait and have an amnio at 16 weeks. The wait was hell, but the amnio went fine and we have now had the all clear. I am now 19+6 and all seems to be progressing normally.

For us, we decided that the right thing to do was to go for further, definitive testing if the risk of problems was more than 1:100. Of course, no one can tell you what the right thing to do is for you, but we considered whether we would continue with the pregnancy if there was a problem with the baby, and then looked at the numbers to make our decision. I am glad that we did it now, as my mind is at rest and I have been able to start enjoying my pregnancy, which felt very much 'on hold' after finding out this bad news.

Olivia has already given you such good advice and comforting words, but I second her. Try not to spend all your time focussing on it. DVD sets are good, as is 4OD and BBC iPlayer. I also found that allowing myself to get engrossed in work helped, and at least gave me respite from the constant worry.

Thinking of you, stranger as I am.

oliviacrumble, this is my first pregnancy, which I think is making it all a bit scarier as I haven't got a clue what I'm doing anyway!

It absolutely is the unknowing that is the worst thing as right now it could be everything from the best case to worst case and everything in between!

Jeffily, I feel like my pregnancy is on hold now too...I was going to wait till after my scan to tell everyone and am in the position now of still not being able to say a thing until I know more. I've had to put away everything I have connected to being pregnant and can't even really acknowledge the fact that I am even pregnant right now in case the worst happens and we can't continue. :(

I will keep my fingers crossed that everything continues to go okay for you and I really hope that you can start to enjoy your pregnancy soon.

Thank you both so much for commenting, it really does mean a lot to hear from other people x

Hi again,

Thanks for your reply to my other post on the pregnancy board. This is my first pregnancy too so really know how you feel with it all being so scary without any of this. And know what you mean about feeling like things are on hold.

In terms of the CVS itself. As I said before, it didn't really hurt me at all, although some women find it different, but in terms of the time taken it was pretty quick - I'd say less than 5 minutes. The scan and consultation beforehand take much longer.

I found so much comfort and support on here when we were going through the worst time so you've come to the right place.

The people at ARC are also very nice if you want to talk to somebody on the phone about all of this.

Thank you everyone again for your comments, it has been really fantastic to hear from everyone and your kind words have really meant a lot.

Yesterday was my scan and consultant appointment in Bristol and I am feeling so, so much better! After quite a lengthy scan, my consultant told me that he measured the NT at 3.6mm (down on the 4.2 measured at Cardiff) and gave me a risk factor of chromosomal problems of 3%!! Considering the midwife at Cardiff initially advised us that it would be 50/50, I can't even put into words how much better I feel!

We decided to go ahead with the CVS as with even a 3% chance, we really wanted to know and we will get results from this on Tues or Weds next week but the doctor (aah, so annoying I can't remember his name!) told us he was feeling confident.

I am a bit sore today after the CVS (which didn't hurt itself at all, they said also my placenta was very accessible and that the procedure had gone as well as it possibly could do) and still feel a bit all over the place, but it is gradually sinking in that things might not be as scary as they first seemed. We're in a sort of holding pattern now I guess till the results come back, and I still can't quite bring myself to look at my scan pictures or consider the future of my pregnancy but I can at least breathe a bit easier.

(I posted in the general pregnancy thread as well and have copied this over there too)

Hope you'll be ok Junebug. Keep strong. The results will be with you soon.

I've been in your position ( nuchal fold of 3.1mm giving me a 1 in 11 chance of abnormality. I had a CVS, and fortunately all was well. I know have a healthy nine year old son. Look after yourself this weekend , lie on the sofa and relax as much as you can, and good luck for your results!

Hello again everyone, I just wanted to let you all kow that we finally had the quick results back from my CVS and they are FINE!! All clear for Downs, Edwards and Patau Syndromes!!! After so much stress and anxiety, I can hardly believe it and still feeel quite numb...but very happy

We now need to wait another ten days or so for the full karyotype results, which leads me to another question - does anyone know what exactly is being tested for on the full karotype?!

Thanks you again for all the comments and support for my original post, it really meant a lot to know that people were thinking about me.

Great news junebug try to relax and enjoy the rest of your pregnancy! Are you going to find out the sex of your baby??

Thanks Eliza! Not sure about the sex, keep changing my mind. After how stressful the last two weeks have been, I think it might be nice to know for sure but do like the idea of it being a surprise as well!

Great news junebug

In the full karotype examination they will be looking for any other chromosomal disorder. The three trisomies make up 95% of all chromosomal abnormalities so the full karotype will test for the remaing 5% and also for mosaic and transloctaed versions of the three trisomies you have already been tested for (these are much much rarer than the full trisomies for which you have got the all clear).

Best wishes.

Thanks nancydrewrocked. Googling to try and find an answer just got me too confused, so a straight forward answer like that is very helpful!

Good news Junebug8, hope the full results come back clear for you. xxx