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).

[pginthecloset]

I think they take the bloods and do the nuchal scan between 11 and 13 weeks.

[pelvicflawed]

Thanks - my guess is I'm 12 week's on the last day of the holiday - so perhpas I can get the testing lined up for the Monday after I get back - if not I'm quite prepred to ditch the holiday but would prefer not to as its a bit of a big family event.

[samandbeansmum]

The nuchal fold begins to disappear after 14 weeks, they can do the scan between 10 and 13 weeks. Maybe you could have it before you go? But the Monday you get back would be in the time frame anyway if you'd prefer to wait.
Have you spoken to a consultant yet, or midwife? I am also 6 weeks pregnant and last year terminated my pregnancy after a diagnosis of Trisomy 13 because we were told our baby was not going to survive. I have to have a scan at 9 weeks, then 11 then 13 (plus further scans later). It might be worth phoning the hospital and letting them know your situation in case they want to do early scans. Hope you get on ok.

[pelvicflawed]

Thanks Samandbeansmum - I've got a GP appointment on 12/5 and hoping that I can get to see a midwife pretty quick after that to sort everything out in terms of testing - I'm also a little hazy on my exact 'dates' as my cycle has varied from 26-31 days over the last few months (always used to be exatctly 27 days)- but I guess the variation isn't that great. Congratulations on your pregagncy and I hope everything goes well. Its very stange this time round -all the normal pregagnacy worries don't bother me at all - just want to get through the 12 week hurdle. All the best to you.

[busierbee]

Congratulations to you pelvicflawed - am very pleased to hear this good news.
Shall I tell you my experience? I asked for a dating scan at about 7 weeks which they were happy to give - given my history of a previous ds pregnancy.
At the Fetal Medicine Centre in Harley Street -and also at UCH where I had mine -they will do a nuchal from 11 weeks and 3 days. Given you are a bit confused re dates ( I was too) the dating scan will help you plan your date for the nuchal.
At the FMC you can have a nuchal and CVS if needed on same day.
Hopefully this time you will not need a cvs.
So you could have one before holiday - peace of mind for hols! - when you get back - go into denial on hols.
Best of luck
Take care
BB

[marj1]

pelvicflawed - many congratulations on your pregnancy, it must be an exciting and worried time for you but I hope everything works out well for you.

I've had a termination for DS and when I spoke to my consultant about what would happen if I fell pregnant again he said as soon as I found out I should phone the hospital and make an appointment, they would do a dating scan and they would scan me regularly up until 12 weeks to keep an eye on things.

I would certainly get in touch with your midwife and get an early scan and discuss what other things they can offer as from what my consultant said to me, once you've had a DS pregnancy they do treat you differently with future pregnancies in terms of their care etc.

[pelvicflawed]

Busierbee and Marj1 - thanks for your emails and good to hear from you - I'm kind of hoping that I get offered a dating scan earlier on - after years of being a like 'clockwork' girl my periods have been a bit erratic since the termination (erratic for me - probably still classed as regular though). Thanks for your experiences - if necessary this time we're prepared to go private for tests - partly so there is no hanging around and partlly because I am genuinely terified of going into the same scanning room at the local hospital (daft I know and I need to get over it!!). Thanks again and best wishes to you both.

[marj1]

Let us know how you get on. Positive thoughts x

[pelvicflawed]

Thanks marji - I know its a bit weird but I'm mentally not really entering into this pregagncy yet - I'm doing physically the right things (no alcohol/folic acid etc), but I'm just not considering myself pregnant - I think its my way of dealing with so that I don't get hurt if it happens again. This time round its really good to know there is ths this topic to talk about it all - as I felt really awkward last time posting on the pregnancy one.

[marj1]

I think it's only nature you are feeling weird and certainly you are entitled to feel apprehenisve about this pregnancy especially after what happened with your son. You probably don't feel like you can relax and enjoy things until you know for certain everything is going to be OK.

How far along are you?

[pelvicflawed]

Hi about 6 weeks and three days - wouldn't test until last Friday - I knew I was just in a bit if denial (even though this is what both DH and I want).

[marj1]

blimey you were up early this morning . I think I would be feeling exactly the same as you, being in denial. Keep us updated on the scans etc. Everything crossed for you x

[NicolaNicola]

Hello Due to a miscarraige we had an early scan at 10 weeks 4 days. I was overjoyed to be told there was a heartbeat. Then there was a strange silence in the room, they put our scan pictures in a sealed envelope.We were told that the NT fold was enlarged but as it was too early to measure it could go away. We were then handed a leaflet on Downs and given an appointment for the next week. The hospital couldn't have handled it worse. We heard them keep saying 4mm so we googled it and nothing was positive. We went back on the 30th and it was 6.8mm so we were sent straight for a CVS. I get the results today at 4pm. The Specialist told us though that with these measurements he would expect that I'd miscarry over the next two week. Also there was fluid all round the baby and not just at the back of the neck so he said even if we get the all clear for downs today he would expect there to be heart difficulties. So really these results won't give me any peace of mind today. I don't know what I expect from anyone out there but really confused and don't know what to hope for

[Peanut08]

Hi,
I feel for you as I went through this last year with an NF result of 4.3 and increased fluid round the body. We found out it was down's at 16 weeks but was determind to give my baby boy a chance and he made it. He did have a heart defect which was corrected at 4 months and is now a happy, healthy baby who gives us so much joy.
I guess the results today are the next steps in deciding what to do. Some would decide DS is enough to have a termination especially combined with heart problems, If it's not DS then further scans at 15-20 weeks would establish a heart problem. Fluid can decrease as the weeks go on. It's very difficult to say though at this early stage. Have you contacted ARC? I found them really helpful and informative.

[mosschops30]

Hi just thought I'd share my experience too.

Am currently 13 weeks pg.
We paid for an early dating scan at 8 weeks because I wanted to be exact for the nuchal.
I was told they can do the nuchal between 11 weeks 3 days and 13 weeks 6 days (I think) but your local FMU or private hosp should be able to tell you.

My nuchal scan was actually very good, the fluid measured 2.3mm and this reduced my risk from 1:353 to 1:601. However when my blood test results came back my risk was taken back down to 1:301 and the borederline for them to offer the amnio is 1:300. Which has left me quite distressed and am waiting to speak to consultant about it at the moment.

Congrats on your pregnancy and I hope everything goes well for you

[NicolaNicola]

Hi
Thanks, I have heard of Arc but thought I would wait until I feel that I at least know something, the difficulty now is that i feel totally in limbo. We don't know how we fully feel about downs, my partner is really great and part of us believes that what makes adult life awful is all the stress you put yourself through, wanting to be the best, worrying about what will become of you, what's your place in life and maybe a downs child could live life in without a good deal of the normal stresses of life in the main. I think severity of anything is the key. We are in our thirties now and we feel for a child that will need lifelong care and what would happen after we were gone. Thanks for your story.

[marj1]

Nicola,

Just read your post and didn't wanted to say you are in my thoughts and hoping for good news at 4pm. It's an absolutely awful time, I know from experience. Marjx

[NicolaNicola]

I couldn't wait any longer, rang on the off chance that it may be back from the lab. They have ruled out downs, which obviously is great news but now nothing really happens for 4 weeks as we have to wait for the longterm culture results. Plus with what the specialist said obviously I am still worried.

[samandbeansmum]

Nicola
Good to hear you have been the all clear for DS (and presumably other chromosomal disorders too?). I know it must be a huge worry and you have been told to expect heart problems, but many of those can be treated (Peanut's story certainly gives a lot of hope).
I know the next 4 weeks will be an agonizing wait for you, I hope things go well, keep us posted.

[busierbee]

Nicola - are you near to London?
There is the Fetal Medecine Centre that could maybe give you a further scan and more details - you would have to pay but they are the best in the world and it may reassure you - the waiting is too awful.
You are one step further along the journey and now you know that it is not a major chromosomal issue.
Well done and reach out here - people are generally very very kind and supportive.
x

[marj1]

Nicola,

Great news about the CVS result, one less hurdle to overcome. The next 4 weeks are going to be awful but try to keep yourself occupied. Thinking of you.

[pelvicflawed]

Hi all - haven't posted for a day or so as I've been busy with work - Nicola I'm glad the CVS has worked out well so far my thoughts are with you while you wait for the rest of the results.

[NicolaNicola]

Hi pelvicflawed.

I really understood what you were saying about not really entering into this pregnancy yet. Everyone looks at me like I have three heads when they say you just must be so excited and the smile literally just drops off my face and I get embarrassed and just don't know what tosay. My real internal response of I am absolutely terrified and daren't even think about being excited is just so socially unacceptable. The eralist we were told you could have any real results from this is 11:4 and it goes up to 13 so good luck. I know it is silly to say but try not to worry. Me I can even dream worries now so I am not one to talk

[pelvicflawed]

Just thought I would give you an update - we saw the screening co-ordinator at the hospital yesterday and have a blood test and scan booked for the Monday after we come back from holiday (2.5 weeks time)- we also have provisional got booked CVS for the Thursday (the earliest they can do it) - obviously hope that we don't need it. We also saw our councellor yesterday and talked it all through and we know that if we get a poor result then the choices we made last time will still stand. Am going to be pretty scared when we go for the scan etc but at least this time its territory we know so I think we are bit better prepared mentally. All the best to you all.

[NicolaNicola]

Well good luck Pelvicflawed. We go on Monday to receive our next results. I will be 16 weeks and I just hope that they can give us enough information to decide whether this is a viable pregnancy or not.