Nuchal Fold testing advice and support

[pelvicflawed]

I've chated to some of you on this board before, last year we decided to end a pregagncy after a postive test for DS - it was a hard decision and all I can say is that it was the right one for us though (though I know that it wouldn't be the path that everyone would choose and I respect that).

Well 8mths later we've just found out I'm 6 weeks pregnant again - can anyone remind me what the window timewise is for nuchal testing? - the reason I ask is very superficial but I'm guessing I'm 12 week's right bang in the middle of a family (ie all my extended family!) holiday to Spain - considering our previous experience I'm prepared to forgoe the holiday to get the testing done in time - just wondered what's the earliest you can be tested?? - sorry its a bit of a ramble - still I think in a bit of a muddle in my head about it (though we did want to try angain).

All the very best for Monday - thinking of you.

Hi all - haven't been around a much recently as I've been on holiday and also I haven't felt really up to joining in any conversations - sorry. Feeling a bit freaked out by everything today - we went for our nuchal scan on Monday which was reasoably positive (2.6mm better than the 6mm last time) and they took my bloods there and then as well - hoping to get me the results back today as I'm provisionally booked for CVS on Thursday. I hoped that having all the info from the scan/bloods would help us make sure that the risk from CVS wasn't going to be greater than having an postive result (if that makes sense). Well the hospital rang today to say my bloods got mislaid and the results wouldn't be back until after tomorrow so they couldn't give me the combined result before I was booked into CVS - ok I thought well can I have CVS (if necessary) done on Friday - no the next earliest time they could do it was Wed next week - by the time I got the results I would be well over 14 weeks. They've calculated my risk based on the nuchal, my age and that I have had a previous Trisomy 21 preganacy and it comes out as 1:32 - feeling very emotional now had hoped it would be better thsi time round and wanted to be sure that going into CVS we were definitley 'high risk'. I think even if they did get my bloods back I probably would be still classed as high risk due to my history but just feeling really scared that its all going to go wrong for us. I know that some people wouldn't have terminated as we did last time when we got a positive Downs result and all respect to them - but I know in our circumstances it was the right decsion for us and we would stand by it again - Just feeling really stirred up this afteroon and all those emotions from last year that I thought I had dealt with have come flooding back. Sorry this all sounds such a self-indulgent ramble just need to express it all and perhaps hear some positive stories!!

Hi there - just wanted to say good luck ? we had a termination after a DS diagnosis in early May (first pregnancy) so know something of what you?re going through, although not the added agony of it being second time round?

These risk numbers are strange, aren?t they? Ours ended up as 1 in 2, as bad as it can be. We rang the one set of friends who we knew had been through something a bit similar, who told us their number had been 1 in 11. They were so sympathetic, saying they literally hadn?t breathed until after the CVS came back clear. I?m sure that if we?d been in their shoes, 1 in 11 would have seemed like the worst thing in the world. As it was, we?d have given anything to have a 1 in 11 risk than our 1 in 2 number. All I?m trying to say, very longwindedly, is that 1 in 32 might not be as bad as all that?

On a practical level, do you think that now you?ve been given the risk (minus bloods) of 1 in 32, you?ll need to go ahead with the CVS regardless for your sanity? Alternatively, does your hospital have a definite 14 week cut off if the worst were to happen? Our hospital said they could be a little flexible with the dates, although we were at a big London teaching hospital so not sure if that applies everywhere. If they could, then you could maybe wait for the bloods and have the CVS next Wednesday if necessary?

Will be thinking of you. K xx

Thnaks Katerina sorry to hear about your experience last May I hope you are doing ok - When we had our termination last August we also got a 1:2 so we knew there was a pretty high chance something was wrong - at the time I couldn't find anyone who had been given such a high risk factor (everyone else seemed to be much lower though of course still very much classed as 'high risk').

I've calmed down quite a bit now and we're going to go along tomorrow and have the CVS - the screening co-ordinator as indicated that the bloods would have to be pretty amazing for me not to be classed as high risk (though obviously hopefully nowhere near the 1:2) and I think we need to know one way or the other.

On a postive note I have this gut instinct that this pregnacy will be ok - last time I instictively knew there was something wrong before I went for screening - its just today's events shook my confidence.

Like I said I hope you are doing ok - it took us quite a while to recover mentally (you don't ever I think get over it - but with time I think you start to deal with it all - if that makes sense). Anyway thanks for your post helsp get all back in perspective - take care of yourself

Pelvic - how did your story end?

Following the most lovely 12 week scan we were hit with a 1 in 9 chance of downs.
Had scan at local hospital and the measurement was 3.9mm had bloods done but was told they wouldn't be back until tuesday.
Decided to get private 2nd opinion (mostly to get bloods back same day).
Scan was more positive - much more through scan came up with 2.4mm, nasal bone, normal heart, nothing seen to be wrong at this stage with bowel.
Was told although my risk was high at 1 in 54 I shouldn't overly worry because apart from the increased fold everthing else looked great.
Got call at the end of day from shocked consultant saying my bloods had brought it up to 1 in 9 and I really should consider cvs.
I'm booked in for cvs on Monday afternoon but I'm terrified. We've had such a difficult journey to get this far...
I'm also really upset that all along we've said if it had downs we still go ahead with the pregnancy yet as soon as we're faced with it we're wondering whether we could cope.
I'm not sure what I expect from this post, I've had some support from the pregnancy thread but they've suggested I post here too.

Any words of wisdom, positive stories most welcome x

Hi Mowmi,

I don't have any advice to offer, just to say I know you're in a very difficult place just now.

The one thing I would say is that if you feel you need to know, cvs would make sense. I have lost a baby at 13 weeks and another at 20 weeks (both with fatal abnormalities) and I can say that the latter loss was so much worse as it was later. And if you would worry and worry from hereon in, it would be better to know. If you feel you can cope with not knowing and would go on with the pregnancy, probably doesn't make sense to have the cvs.

How old are you? the 1 in 9 still makes it 8 times more likely than the baby will be fine than not.

Good luck - am thinking of you.

Can't do - I'm 36. I am a worrier and I'm much better when I know what I'm dealing with so I think cvs is the right decision.
Feeling bit better today because I'm back to my original frame of mind that if the result doesn't go our way we'll cope - dh seems to be there or thereabouts too which means I'm a bit calmer.

x

Mowmi, you sound so calm and sensible. Well done for maintaining that.

I think the cvs is a good idea tbh because the risk can be for other chromosomal disorders other than Downs syndrome too, and this could lead to different decisions.

Good luck though and I have my fingers crossed for you.

Dear Mowmi
Just wanted to say that am thinking of you today and that I hope the cvs was not too painful.
You are now in the waiting game - not nice for anyone.
Try and distract yourself if you can - whatever it takes - lots of baths or DVDs or walks or chocolate or whatever you fancy.
Your chances of having a healthy baby are much higher than your chances of not - as Cantdo has said.
I wish you luck and do reach out if you need a friend - we are here whatever may be.
Busier Bee
xxxxxxxx

Pelvic
This is your thread - so if you need to reach out to us then please do lovey.
With thoughts and kind words ready if you need them
big hug to you
Bee x

Hello again,

Thanks again, I had the cvs yesterday and it wasn't pleasant I wouldn't look forward to having it done again but it was bearable and over quickly.
The team were really lovely to us over at kings and walked out feeling looked after.
They did another through check of the body and his heart and all looked good, I do need to see a cardiologist later in the week just to be safe due to their cut of point on the nt measurement.
Results are due in 3-5 days so the wait is going to be tough!
I'm at home resting today - they told me not to worry too much re mc because it was very straightforward and baby's hb was good and strong following it.
Feel better now it's done just need to wait now....

Hope you two are well. Will keep you posted x

Hi Mowmi

I've got my fingers crossed for you that everything is okay. Glad the procedure was straightforward and you were well looked after.

Let us know what happens and I really wish you all the very best.

I am okay, thanks for asking -- it's been a difficult time but I'm coping.

Sorry to hear you're having a bad time too - do you mind me asking what's happening with you?

Sorry, I didn't say. I have a 2 year old DD (all fine).

I lost a baby at 13 weeks after a terrible nuchal (measurement went up to over 10mm) last year - fatal chromosomal disorder (not Downs). Had termination because baby woudn't survive.

Then at the end of May my 20 week scan showed fatal abnormality (no kidneys - means no chance of life because no lungs can form either) so another termination. I am still in the midst of the grief for that. Though I know how lucky I am to have DD. Apparently these 2 pregnancies haven't been related problems so doesn't mean it would happen again but it is tough.

Good luck with the cvs. I am sure it will go well (the first tme I had the terrible nuchal, my risk was 1 in 2, and I was told that if it wasn't a chromosomal problem the baby probably would die shortly anyway). So your case is so much more hopeful. And I am not telling my story to get sympathy just so you know I do understand how hard it is to wait.

Take care, and I recommend novels in the interim. Do you have other DCs?

I'm so sorry for all you've been through. You must have been in pieces - I fell apart after a mc at 8 weeks... so I can't imagine how much pain you've been through. May is only a few week ago - I'm sure you're feeling still terribly raw.

I don't have any children yet but not for the want of trying! I've got pcos and was rarely ovulating, dh sperm count wasn't great so we were told to go for ivf.
When we were about to start our first cycle dh found a lump in his testicle - you can guess the rest!
4 months of chemo later he was told it was all gone - 18 months later all his check ups are going well and his doc is very happy with him.

We've since had 2 rounds of ivf, 1 of which worked but I mc at 8 weeks (never developed past a gestational sac).
IVF's were all done with frozen sperm as we were told to wait 12 months before trying again naturally. First month we tried resulted in little boy in my belly.

If it is only ds wrong with this baby then I want to keep it - petrified at what this might mean though. We always said we would and would only consider a termination if baby was really physically handicapped (hope this doesn't sound awful!?) as we didn't think we'd be able to cope or like you a baby which had no chance of survival.
I think dh is in the same place but he's a bit more frightened for the future, that said he's a lot more positive about this little one being ok than I am.

Sorry for the long ramble.

I hope you have lots of lovely support around you.

How old is dd?

Take care

Mowmi do come onto special needs to ask about life with a baby with DS. Most children with DS have moderate learning disabilities (it's a spectrum from mild to severe learning disabilities but most will fall into moderate so that would be the expectation) and tbh life with moderate LD's is very normal. The most worrying thing about DS is of course cardiac problems, but it sounds as if things are looking good on that front even if your baby does have DS.

It's a condition which has changed so much. When we were growing up there was no legal right to education for people with learning disabilities (that changed surprisingly recently- can never remember the year 80's I think) and so with education things have changed. The most able person I know personally with DS is taking a regular number of GCSE's (8 or 9), and travels to and from her mainstream comprehensive independently. Those that I know who are more affected (some adults and young people) live semi independently, have relationships, jobs and friendships.

But do come into SN if you want to ask something. Waiting for results will be horrible, but perhaps less horrible if the thing you are dreading doesn't seem so bad. IYSWIM.

Thanks for your post Saintly. Your post is really reassuring and backs up what I'm imagining and hoping for.
Taken your advice and made a post on the special needs thread.
Take care and thanks again x

Hi Mowmi, what a lot you've been through to get here. I really do wish you all the very best.

I agree with Saint that the heart looking good is a very good sign. And I understand you being unsure about DS - I have no experience of it either. I think it's a very personal decision and it's good you're finding out more anyway - we probably should all know more about learning disabilities. CVS can detect other chromosomal abnormalities other than DS, though, so it's worth doing even if you know you wouldn't terminate for DS - and also for peace of mind.

I am still raw obviously - my baby girl was stillborn on 5 June. I have found much comfort on Mumsnet as it happens.Hence reaching out to you now. Take care of yourself, and come back to talk whenever. And good luck!

We've just been given the all clear! Think we are the happiest couple in the whole of Surrey!

Thank you for your kind words and support - it really was most appreciated.

Best wishes to you and your families x

Cantdo - I will be lurking around looking to see how you are doing - I hope you begin to feel better soon.
Thank you again x

I am delighted for you Mowmi! you really deserve it. Enjoy the rest of your pregnancy and relax now!

I'll look out for news of when your lo comes - when is it due?

I'm due 21st January. Hopefully we can relax a bit now x