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Original poster

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.

OP posts:
mrslurkalot · 26/07/2012 09:07

Hi MM, Glad you had a better day than you were expecting yesterday. You're MIL and FIL sound lovely! Hope today is ok, do you have anything planned? How are you feeling this morning? x

freshfruitsalad · 26/07/2012 18:12

Oh I don't know what to say Sad
Well I found myself in a similar situation and our amnio confirmed DS, it's our first long awaited child so termination was not on the cards for me
Your decision is unique to you, there is no right and wrong, for us we thought if we terminated what could be our only child, we would feel very guilty, lonely and sad, I am happy to dedicate my life to raising my child, disabled or not

Thing is, you can't change anything about the next 2 weeks, so engage in different activities and keep yourself busy so you don't worry as much
I feel for you :(

JugglingWithTangentialOranges · 26/07/2012 19:25

Hi ffs

I didn't have any tests with my second (apart from scans) as I knew he was a keeper from the beginning. All the best to you Thanks

purplesprouting · 26/07/2012 20:29

If you change your mind about going privately (and have the funds) the foetal medicine clinic in Harley st is as good as it gets. I had cvs there at 15+ weeks, test on weds, first results on Friday.

Sessions are weds, they run hugely over time but give you the time if you need it.

Sorry if it is too far, difficult, expensive just thought you might like to know if waiting gets too much.

Pizdets · 27/07/2012 13:20

Hi purple, just a quick question - a couple of my friends have said that if you go private then they're much more positive about the odds and what it means for you...did you find that? I think I'd rather prepare myself for bad news but it's interesting to compare how you're treated.

Only a few days to my amnio now so not worth it for me. But am freaking out at the moment, spent most of last night in tears. It's so hard to deal with the stress on top of all these hormones. The idea that 2 weeks from now I might not be pregnant any more is horrifying.

Mummy, hope you're doing ok and don't mind me spilling my guts on here, it's comforting to know other people and been through/are going through this and come out the other side somehow.

Piz

purplesprouting · 27/07/2012 23:37

I wouldn't know generally but the foetal medical place is as rigorous and thorough as they come. Clear about risk and the relative contribution of bloods, scans etc but blunt and direct in making sure we considered the reality of living with ds and the risks of not having a cvs which we were wibbling about.

purplesprouting · 27/07/2012 23:39

Sorry posted too quickly, I do wish you and mummy all the best. The waiting is awful:(

Pizdets · 29/07/2012 10:58

Thanks purple. Amnio first thing tomorrow and very up and down. Definitely feels like I don't really understand the odds as never had the bloods done (were supposed to be going straight for CVS after the scan but placenta was in wrong place), and think that would have been useful.

Can I ask, what was the outcome of your amnio? Sorry if you said and I missed it.

purplesprouting · 29/07/2012 21:56

Hi and very good luck with it tomorrow. Hope the day goes ok.

We came up all clear after the cvs and full karyotype. Started off at 1 in 10...wish you similar luck.

mrslurkalot · 29/07/2012 22:12

Good Luck Pizdets xxxxxxxxxxx

Original poster
mummymonkey08 · 29/07/2012 23:23

Good luck for tomorrow Pizdets, will be thinking of you x

As for me, I've calmed down a lot over the last few days - my tactic to surviving until the amnio with my sanity (almost) intact is to just try and keep the whole situation out of my head. I'm even forgetting I'm pregnant

  • sounds terrible, but think I'd lose my mind otherwise.

Only 10 days to go until the amnio...

OP posts:
Original poster
mummymonkey08 · 29/07/2012 23:24

PS of course I don't mind you talking things through on here - as you said, it's just good to know we're not on our own.

OP posts:
Pizdets · 30/07/2012 12:20

Hi all,

Amnio was fine, really didn't hurt and over fast. Now just taking it easy. Had anomaly scan at same time which was a mixed bag...all 'normal' but femur and humerus on the short side, which I know can be a sign of downs. Argh! Results at the end of the week, can't bear it.

Mummy, think trying to ignore is a good thing, there's nothing you can do so hope you're managing to keep calm(er) and 10 days will fly, whether you want it or not! At least once you know you can make informed decisions.

Original poster
mummymonkey08 · 30/07/2012 14:26

Glad it wasnt too bad this morning, Pizdets - now the worse bit, the waiting! Really am keeping everything crossed for you.

xxx

OP posts:
Pizdets · 31/07/2012 19:20

Thanks Mummy, hope you're bearing up OK. I thought post-amnio wouldn't be much worse than the last 3 weeks of waiting but I seem to be having some kind of meltdown over the last couple of days. Both DH and I feel like it's unlikely to be good news based on the scan report and the odds they gave us, but waiting 3 more days to find it out is horrible. I just hope that if we do decide to go for a termination, that we can get the process moving quickly and won't have to keep waiting.

Hope your 'ignoring' strategy is working well and your other kids are distracting you well (and that your lovely in-laws are still helping out!).

Piz

minipie · 01/08/2012 00:47

Very best of luck to those waiting for tests or results. I know it is nerve wracking.

Just to respond to pizdets re the fetal medicine clinic - they gave me worse odds than the NHS (bit better for Downs but worse for Edwards/Patau which the NHS didn't give odds for). I wouldn't say they presented the odds in a more positive light than the NHS, the reaction was basically "well you have the option of further tests" after both. I ended up having the CVS at my NHS hospital and the result was clear.

Again, best wishes to those awaiting tests or results.

Original poster
mummymonkey08 · 01/08/2012 12:16

Pizdets: I really feel for you. I'm sure I'm going to be in total meltdown waiting for the results as well. When are you expecting the dreaded phone call? I feel sick just thinking about it.

OP posts:
mummytoh1 · 01/08/2012 14:27

I really do feel for you both with this waiting malarky. I only had to wait from 'the results call' on a Thursday at 3.45pm until a CVS the next day at 9am, but then from the Friday morning until the Tuesday afternoon for the results. Once the CVS was done, I felt better that day and Saturday/Sunday as I knew the results were round the next corner and the phone wouldn't ring. Monday I was very edgy just incase they were back early and the call came unexpectedly, but on Tuesday, the day of 'the call' I swung between hysteria and rocking back and forth (honestly!). And 'the call' didn't come until 4pm, by which time I thought I was losing sanity. Thankfully I got the all clear but I remember only too well how I felt and what I was thinking. I really do hope and pray for both of you that you get through this wait ok and you get the results you are hoping for. Much love x

Pizdets · 01/08/2012 16:51

Thanks guys. I think I'm quite lucky as my hospital has a different system to prevent you having to wait for 'the call' - we've been given a time slot to call in (tomorrow am, 9-11) and get the results ourselves. Suppose it means we don't get the benefit of results coming in early, but at least we're not on tenterhooks waiting for a call, that would be horrible! Mummy, do you definitely know how your hospital do it? Maybe you can do something similar?

I'll come back and update either way when I can. Hoping desperately but really don't feel like it's going to be good news so don't want to let my hopes get up. Mummy, thinking of you and hoping all going OK. Mummytoh1, thanks for coming here to share your experiences, means a lot to know we're not alone!

freshfruitsalad · 01/08/2012 19:01

Good luck for your results pizdets x

minipie · 02/08/2012 11:10

Thinking of you Pizdets, have my fingers crossed for you.

nkf · 02/08/2012 11:14

Good luck for the results.

Pizdets · 02/08/2012 16:01

Hi all. Just got the results back (they weren't available at 9 as promised so we had another day of waiting) and all clear! Can't believe it, we'd convinced ourselves it was ds. Thanks so much to you all for your good wishes, it's meant a lot.

Mummy, hope the good luck rubs off on you too. We're not out of the woods yet but feel very relieved, will keep checking in and thinking of you!

minipie · 02/08/2012 16:10

Oh fantastic! So pleased for you. Go celebrate! x

newbie6 · 03/08/2012 09:47

Hi

Congratulations on your result Pizdets.

mummymonkey08 I had a 1 in 7 of DS which I know is not as high as 1 in 2 but wanted to send you a note to say I am thinking of you. I was fortunate to be able to have the CVS so from hearing my nuchal results to getting the CVS took about a week and then we luckily got our results the following day which were all clear. I totally understand how you are feeling as no matter what anyone says you cannot get the blooming number you are given out of your head and keep wondering whether you will be the one. Like you, I felt I disconnected from my pregnancy during that time as I found it was the only way I could cope.

I can only say keep focussing on being in the 50% that will be okay as they are still good odds. I really sympathise that you are needing to wait for an amnio as I actually found waiting the week for the procedure the worst part. If it is any help at all, once the procedure was done I actually felt a sense of relief as I knew I would get a definite answer very soon. Don't get me wrong, the wait for the results is still hard but I think I had accepted that wait if that makes sense.

Try and stay strong and be reassured that any decision you make will be supported as it it entirely what you feel is right for you and your family, it doesn't matter about anyone else - wishing you lots of love and you have my full support.

take care

xx