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Antenatal tests

1:2 risk of DS, so scared

90 replies

mummymonkey08 · 25/07/2012 05:54

After a nuchal translucency test last week, I have been given a very high risk of having a Downs baby - a 1:2 risk, in fact.

Saw the screening midwife on Monday afternoon, who went through our NT results and explained why we have the 1:2 risk. Nuchal fold measured 5.2mm, and because of my age (35) and high hormone + significantly low protein level (think I've got that the right way round), that's given us the 1:2 risk. We have 1:17 risk of Edwards/Patau.

To my disappointment, I'm too far gone for a CVS, so have to wait another two weeks before an amnio can be done.

All this waiting and not knowing is killing me. One minute, I can be up and feeling positive; the next, I feel so low and unsure of what to do. I know DS children can have relatively normal lives these days, so I can't help but feel a termination isn't an option. But when I think about raising a DS child, as well as having our two other children, I'm filled with fear and - for selfish reasons, I will admit - don't think I'll be able to do it.

My husband works away from home quite a lot (it's now 5am, and he's just left in a taxi for the airport), and even though he says he's going to try to change that so he's home more, I don't think I can cope. It's also hard to talk about the negatives of having a DS child with him, as I think he's already decided what his course of action is.

I know I'm worrying prematurely as we've not had the amnio yet, and there's still a slim chance everything could be normal, but I can't stop myself from fretting. I'm dreading waiting for the phone call with the amnio results. Already I'm regretting trying so soon for another baby, and even getting to the point where I'm thinking miscarrying might be a blessing.

At this precise moment in time, it feels like I have an impossible decision to make. I am so scared, and I feels like I can't really talk to anyone.

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nkf · 03/08/2012 11:52

Very good news.

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Pizdets · 03/08/2012 14:13

Newbie, what a lovely message! Mummy, I'm thinking of you a lot too, the waiting is horrific, and I hope you're doing ok.

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mummymonkey08 · 03/08/2012 21:11

Pizdets AMAZING news! I'm so chuffed for you!

Thanks to everyone for sharing their positive experiences and all the good luck messages - I'm immersing myself in the Olympics to take my mind off everything. In fact, I've managed so well, that being pregnant completely slips my mind most of the time... A good thing as I'm not wasting energy worrying, I suppose, although I do feel guilty - of course! - when I do remember...

Five days until the amnio...

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Pizdets · 06/08/2012 10:06

Hi mummy, it's pretty useful having the Olympics for distraction, isn't it? Hope the Ennis/Farrah/Rutherford performance was suitably distracting! Good on you managing to switch off, sounds like you're doing really well.

We're just off on holiday for a few days and not sure I'll have internet access, wanted to make sure I let you know I'll be thinking of you on Wednesday and hope all goes well. will try to check back in if I can. Good luck! Piz

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shoeprincess2 · 06/08/2012 14:27

mummymonkey08- just wanted to wish you well for your amnio. I was given a 1:5 chance back in March and had to wait 3 weeks for the amino (as I opted not to have the CVS). I was absolutely exhasted from all the worry and waiting- it was actually worse than the amnio itself. Anyway, the results came back as fine and I had a thorough scan at 20 weeks and a fetal cardiac scan at 24 weeks and nothing was flagged up. I now have just 4 weeks to wait until I meet my little boy. Good luck with everything. S x

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BeatTheOdds · 07/08/2012 09:21

Hi mummymonkey I just wanted to say hello because I'm going through this at the moment and your original post really struck a chord with me. The swing between feeling positive and feeling hopeless, half wishing for a miscarriage, the agonising waiting, not knowing what to do, the guilt, feeling disconnected from the baby, it's all there.
I'm wishing you lots of luck for the amnio coming up. I too was given a 1:2 chance of a healthy baby and yet I had some good luck with my initial results from a CVS. So there is hope.

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mummymonkey08 · 07/08/2012 13:05

Thanks for the good wishes Pizdets. I'm glad tomorrow is the big day, but the wait until Friday will be torture.

BeatTheOdds & shoeprincess2: stories like yours give me a little hope. I really hope I can join you with some positive news of my own, but only time will tell.

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minipie · 07/08/2012 13:28

Best of luck mummy for tomorrow and for Friday.

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newbie6 · 07/08/2012 18:51

Thinking of you tomorrow and hope you don't need to wait too long. Thinking positive for you x

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Pizdets · 07/08/2012 21:27

Hi mummy, managed to log on quickly to say good luck for tomorrow. The amnio wad really fine...almost totally painless so don't let that worry you!

Some lovely stories from people on here, hope you and I will be able to come back and reassure other people ourselves in a few weeks! Full karotype due back Fri/Mon for us so will be waiting with you.

Piz

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freshfruitsalad · 07/08/2012 22:14

My amnio was fine too, you felt it, but no pain and I HATE needles, just watch screen to keep mind on something else, good luck for it and will check back Friday, we got our results back next day but then they were tested on site

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newbie6 · 08/08/2012 18:22

Hope you got on okay today mummymonkey08 x

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mummymonkey08 · 08/08/2012 19:04

Thanks again for all your good wishes, you've all been brilliant.

It was a long morning - had to go in early to have my bloods taken, as they only realised YESTERDAY that I hadn't been tested for my rhesus status (or whatever you call it) as I've not had my booking app with the midwife yet. I was a bit upset and annoyed that, after over two weeks wait, someone was now telling me that I wouldn't be able I have the amnio until the blood results had come back. Thankfully, I was able to have them done at 8.30 this morning.

Amnio was scheduled for 10.30 and was a little delayed, but the actual procedure went fine. A few more people than I'd expected in the room - two sonographers, the midwife who counselled us through the procedure, the consultant who actually drew out the fluid, plus the almost inevitable medical student! I'd thought I'd have a local anaesthetic, but there was nothing like that. It wasn't painful though, just a little weird feeling, especially as they took ages to try to pierce the membrane - strong membranes are a good thing, apparently! Quite a bit of wiggling about to make sure they had a good pool of fluid to draw from. Of course, baby didn't co-operate and moved around a lot to hinder the process as much as possible!

I know you shouldn't read into things, but I'm clinging onto whatever hope I can glean from anything - strong heartbeat, active baby, etc. Of course, I know deep inside that a DS baby would just as likely be very active and have a strong heartbeat, but I can't help but hope.

All being 'well', we'll be phoned with the results on Fri afternoon. They have our home number, so my DH will be on phone duty - I don't think I'll be strong enough to take the call.

So it's just the waiting game. Getting through it by not thinking about it - have been a bit of a hermit over the last couple of weeks as I don't really want to talk about it to people any more than I have to.

To any of you who are in similar waiting games right now, I can really empathise. It's horrible.

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newbie6 · 09/08/2012 08:44

Well done for being so brave, I know how horrible the wait is so will be thinking of you. I watched lots of stuff saved on my sky planner while I waited and it did help distract me a little. Stupid as it sounds, I watched a Michael McIntyre Roadshow and I even managed a smile so hope you get through the next day and half quickly and keeping everything positive for Friday pm. xx

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mummytoh1 · 09/08/2012 11:42

Very best wishes and luck for tomorrow afternoon mummymonkey. The wait is torturous, I know, but as newbie6 says, you need to try and distract yourself as much as possible to get through the next 24 hours. xxx

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BenedictsCumberbitch · 09/08/2012 11:48

Good luck, I hope whatever the result you manage to get through this the very best you can. We had an amnio due to a raised nuchal fold and the all clear results came back in 24 hours but it was still the longest 24 hours of our lives. Much love being sent your way xx

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minipie · 09/08/2012 12:09

Best of luck mummy I really hope you get the all clear.

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katiecubs · 10/08/2012 08:42

Thinking of you today and have everything crossed for good news x

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Pizdets · 10/08/2012 14:10

Fingers crossed for you!

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mummymonkey08 · 10/08/2012 14:18

We've had the phone call to tell us the results - we have a Downs baby.

Having thought about it at great length over the last couple of weeks, we have decided to have a termination. We go in on Monday morning to see the midwife and consultant to hopefully get the process started.

Now what I'm worried about more than anything is telling my parents what we're going to do. They're pretty strong Catholics, and I know their views on things like divorce etc. I wouldn't be surprised if they say they can't have anything more to do with us.

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minipie · 10/08/2012 14:27

Oh mummy. So so sorry it wasn't the all clear.

I hope your parents surprise you by being unjudgmental about your decision. People are sometimes more hard line with their views in theory than in practice iyswim and I really hope that is the case here. Nobody can really judge until they have been in the position themselves IMO.

I hope all goes smoothly for you xx

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katiecubs · 10/08/2012 14:31

Oh mummy i'm so sorry. Have been through this too, although with a differant diagnosis.

How much do your parents know already? Do you feel you have to disclose everything to them? I really hope they and more understanding than you think.

Will be thinking of you next week x

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newbie6 · 10/08/2012 14:59

I'm so sorry mummymonkey08 - thinking of you. I agree with katiecubs - do your parents know everything as if it is easier I think this is where a wee white lie may help you cope? The last thing you need is confrontation right now, you have my full support at this very difficult time and I really hope you get all the support you need.

xx

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Pizdets · 10/08/2012 15:25

Oh mummy, so sorry to hear! I agree with the above, hope your parents surprise you with their attitude. My parents and grandparents are very religious (c of e) and I talked through the options with them before my amnio. was really worried they'd disapprove but they were ready to support us whatever we decided.

Full support from me too.

Piz

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mummymonkey08 · 10/08/2012 18:16

Well, it went as well as I could have hoped. Dad went quite quiet but then said he didn't agree, but it was our responsibility. Mum was fine, but as an ex-midwife, she wanted to talk about the procedure more than I was comfortable with today.

Anyway, main thing is that we've not been disowned - was seriously thinking it might come to that, a few hours ago!

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