Nuchal fold problem detected on my 12 week scan

[junebug8]

I had my first scan yesterday at 11+5 and the midwife picked up a problem with the amount of fluid behind the neck (Nuchal Fold?). She measured it at 4.2mm, and the normal range is up to 3mm. 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 a Chorionic Villus Sampling test done to look at the chromosomes and see exactly what the problem is. Everyone I spoke to yesterday 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, like Downs or Edwards Syndrome or Turner's Syndrome or a heart defect or even a virus. It could be something that means my baby would live for barely hours after birth. They said as well that it might be nothing, but it is more likely to be a problem than not.

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 a bit of a state, and I'm really hoping someone out there has gone through/going through the same thing and can offer me any advice at all. :(

Hi junebug - glad to hear you are feeling more positive and really glad your scan and test went well. Crossing fingers for a good result :)

Thanks whizzymummy, the more crossed fingers I have on my side the merrier!

it is strange Junebug. I really hope you have a good outcome.

the more I hear of this happening the more strange I find it because she really shouldn't have been doing that test if not trained.

JuneBUg 9 years ago at UHW they found a thickening at the back of the neck of my baby. TBH they really worried me I was referred to the fetal medicine team (Mr Beattie) and offered further testing. I declined as I was very high risk for miscarriage and adopted a watch and wait plan. Fortunately the annomally scan was fine and 9 years later he is a very healthy boy. But I can so understand how worried you are I too kept my scan photos hidden and refused to believe it would be OK til he was born well. FWIW because UHW has all the latest technology etc they often pick up on things that other hospitals wouldn't and Mr Beattie actually told me that had I been seen elsewhere they wouldn't have spotted the problem but UHW had just started using a new scanner which picked things up in more detail than was sometimes helpful. I'm sorry if this is abit garbled but I am sending you some unmumsnetty hugs and hoping all will be well.

Oh and Junebug when they did my dating scan it took ages and I kept asking the radiographer what he was doing he was very non comittal and told me it was mainly a dating scan. I had actually declined a nuchal scan and felt very angry afterwords that he went against my wishes.

This sort of testing by the back door as it were is very worrying. I accepted a dating scan but declined the triple test (nuchal not offered here at that time) I would have been livid if they'd put a number on a risk anyway - when I'd said I didn't want it. It's a clear invasion of a woman's right to choose what interventions and tests she wishes to have and potentially it will reduce the number of women attending for scans. Clealy by attending for a scan you are accepting that you may find out about major structural issues - but you aren't automatically accepting that you wish to be given information on risk measured from 'soft' markers and they shouldn't start chucking that around without informing you properly.

Anyway - hope the op gets good news from the CVS

I agree lurking... It's also not right to say that it's a Nuchal scan if they aren't going to do the bloods too and on the same day. I know my SIL's 12 week scan was somewhat tainted by the fact that the Sonographer immediately started talking about problems and sending her for a CVS. Lots of women decline the NHS blood tests and so it's really unfair to sneak up on them with nuchal measuremnets IMO

I couldn't agree more Duelling and Northern I felt utterly powerless and so angry as the whole thing was done without my consent and added worry to a very stressful pregnancy.

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.