nuchal test 1:11 for down syndrome, waiting for cvs result

[drivingmisscrazy]

not sure why I am posting really - just need a bit of hand-holding while waiting for cvs results (friday all being well). We are in shock, although shouldn't be - nuchal fold measurement 2.77mm (at 12w6d), nasal bone present (although this wasn't factored into test), one set of bad bloods (forgot to ask which), maternal age 41.

we will terminate if it's downs, and this will be our last pregnancy if that happens. Now I know that 1 in 11 means that there are 10 chances it will be fine, but I am preparing mentally for worse case scenario. Someone has to be the one. We are very stressed, of course, but this is made worse by the fact that we live somewhere that terminations are illegal, so DP will have to travel, most likely alone (we have a dd aged 2) in the event of a termination. This feels nearly as dreadful to me as the termination itself - that I won't be able to be there to comfort her :(

Just to avoid confusion, we are a gay couple and it is my DP who is carrying.

[drivingmisscrazy]

anyone?

[leeloo1]

No real advice but I'm so sorry to hear you're in this situation. Fingers crossed it'll all be fine.

{{hugs}}

[drivingmisscrazy]

thanks - as I say, nothing anyone can do or say until we know the results. Friday seems like a long long way away

[leeloo1]

It must seem an age - time goes so slowly in these situations. :(

Can you try to get engrossed in something to avoid thinking about it (as much as possible). Something mindless but useful - reorganising cupboards/decluttering? - might be appropriate?

[drivingmisscrazy]

indeed; highly necessary in any case!

[misty0]

So sorry to hear about your situation xxx If its any consolation - whatever the outcome of the CVS - this, in my experience, is the worst part. I had a termination for DS last month, and like you had to wait for the CVS results. The shock of the scan, and that subsequent waiting for results was worse by far, frankly, than the termination itself. Strange - but true. I've heard it said often that once you have faced the worse case senario, an odd peacefull coping mechanism kicks in.

Fingers and everything crossed for you both that it doesnt happen that way for you - as you say you have a good chance still that all will be fine Please keep us posted about how you get on? There is much love and support here for all steps of the way xxxx

[drivingmisscrazy]

thanks misty had seen some of your posts when i was lurking about on here before the tests (I'd tried hard not to think about it, but knew that this kind of risk was a possibility), so your sharing your experience is particularly useful and very very much appreciated.

The interim is hard - family know about the pregnancy but not about our odds, and keep talking in positive terms (we felt there was no point burdening them with it until/if we need to). We also are conscious that because termination is illegal here a lot of people will think that it is an immoral thing to do...

[glastocat]

I just wanted to tell you I got a 1:11 result with a 3.1mm nuchal measurement, aged 31. I had a CVS the next day, and got the results four days later. My healthy nine year old son is playing lego and watching the Simpsons as we speak. We also would have terminated if we had been told he had Downs. So good luck, and let us know how you get on please.

[glastocat]

We also got the result at 12 weeks 6 days.

[DuelingFanjo]

Crossing my fingers for you both. I had a 1:80 chance and the wait for test results (amnio in my case) was horrible. Just wanted to post to hand-hold and wish you the best. I was almost 40 and it was a last chance for me too, I would have terminated but fortunately the amnio came back clear.

[applechutney]

So sorry to hear you are going through this. I was in this position last august.

Unfortunately things did not have a positive outcome for me, but if it's any consolation, there was no nasal bone present when i had my amnio at 16 wks.

I am also in Ireland (sorry, had a peek at your profile), and believe me there are many people in your position here, and also prepared to make the tough choices if necessary.

Keeping all crossed for you for friday. It's a cliche but true, the waiting is definitely the worst part. Bloods are far from infallible, as I'm sure you know.

[Mum2be79]

Do you HAVE to have the nuchal test?

I'm 32 and 7 weeks + 5 days with my first child. I was sent information about this through the post. But since I am a worrier (panicky already that I'll miscarry), I thought about if it is really worth it? The reason being is that I think whatever odds I'd be given, it would scare me as I tend to dwell on the negative and I'd be reluctant to abort anyways - not saying that I won't! (personal choice but have no negative feelings towards those that choose to abort).

[drivingmisscrazy]

no, I think like all tests it's your choice; here in Ireland they are not routinely offered and you usually have to go private. We came to the conclusion in retrospect that we only had the test because we would terminate - but other people like the reassurance, or if the tests are less than reassuring, then some people like to be prepared.

It's a toughie, but you would be low risk based on age and most people wouldn't bother...

applechutney I appreciate the support, as it does feel somehow very taboo (worse than coming out to people :o)

duelling our last chance because I think if this one doesn't work out DP doesn't want to go through another pregnancy (this is her third, one mmc), plus all the logistics, so our wonderful DD will be an only. Her presence does make all of this a bit easier to bear.

[justforthisonepost]

Drivingmisscrazy - have sent you a PM

[drivingmisscrazy]

justforthisonepost - I don't seem to have got it; would it come to my inbox (at the top of the page?)

[justforthisonepost]

I'll try again!

[mrsbigz]

just wanted to add my support and hope that you get good results on friday. i had a 1:5 risk of DS and unfortunately we did not have a good outcome, and we terminated our pregnancy at 17wks back in March. it was the right decision for us. saying that there is every chance that everything will be fine with your results, and the presence of a nasal bone is a really positive sign.
please let is know how you get on - will be thinking about you xxxx

[drivingmisscrazy]

still 24 hours to go...possibly a little more as I don't know when they will call. I am trying to be positive - trying to think about our little guy hanging on in there (for some reason we both think this one is a boy), but at the same time DP and I both feel like we have to disengage emotionally from this baby for now. DP said that the hardest thing about the cvs was seeing the baby flipping and wiggling around on the u/sound screen - in the full knowledge that we might have to end that life.

anyway, I am trying to keep busy (the 2 year old is helping with that!): I cannot tell you how much I appreciate these messages of support and sharing of experience. You all know where we are right now and it's very helpful for me to hear about your experiences - with both outcomes. I am so sorry for those of you who have lost babies this way as I know how hard the decisions are.

I'll be back...

[Cinnamondog]

Hey driving,

Glad you found us. Can't really add much to what the lovely ladies have already said, just hoping that some of the positive stories are able to give you and your DP something to think about while you wait; of course someone has to be 'the one', but that doesn't mean it will be you honey! That sounds flippant I know, but it is the truth, there is that much more chance it won't be you.

I can completely empathise with seeing the baby, how that feels like the worse thing. Two minutes before they dropped the bomb shell on me and my OH we were so excited; little lady actually looked like she was waving at us! And now, even though it broke my heart at the time and I tortured myself over and over again about it, it is one of the things I hold most dear; a shared moment with our little angel that nothing can take away or spoil.

I hope today goes very quickly and that you and your DP get the good results tomorrow, please let us know if you feel you can. We are all here for you both, keeping everything firmly crossed!

xxxxxxxxxxxx

[drivingmisscrazy]

thanks all - the bad blood number was the HCg, the Pappa was normal - so we have contradictory bits of evidence all over the place; a nasal bone, a NT of 2.77 which isn't great, but isn't terrible either. There are various reasons for high Hcg, many of them not good (and DP had normal levels with the other pregnancy, so it's not constitutional, as it were).

I had a bad morning after seeing the results, feeling that a positive diagnosis for Down's was almost a certainty: but as I say, the evidence all seems contradictory, and it may be that the hcg will need looking at in any case (although baby is not currently small for dates).

aaargh...even if this works out, I feel a bit sad that we haven't had a pregnancy without worry of one kind or another - although in a way will be delighted to worry our way through the rest of this one, god willing

[applechutney]

Thinking of you tonight driving. Will be checking in to see how things are for you both.

Take care of yourselves.

[drivingmisscrazy]

thanks apple - I think we have gone into the calm place after the flurry of adrenalin and stress...DP has done various bits of research, as has DD's dad (he's a very talented medic) and once you take the age-related risk out the odds do look better. But then, the age-related odds are there for a reason...I think I just find it hard to accept this as the reason why DD might be an only child. But will update when I have news. It's so humbling and moving to have all these strangers sending us good thoughts - it really is appreciated

[mrsbigz]

also thinking of you tonight hun, and hoping you get good news tomorrow xxx

[Deanna1977]

Thinking of you tonight. I have had two CVS's (1:31 (DS1) & 1:26 (DS 2). Both came back clear but the wait was horrible. Just wanted to post to hand-hold and wish you the best.

[drivingmisscrazy]

god, it is scary, isn't it?