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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.

OP posts:

Report

mummymonkey08 · 14/08/2012 20:14

PS Now unsure as to whether I've mentioned my septum problem on here, as I've been posting on a couple of forums recently. Ignore me if you've no idea what I'm talking about!

OP posts:

mummymonkey08 · 14/08/2012 20:12

Oh Pizdets, I'm so sorry to hear your news

I'm being admitted tomorrow morning for the main part of the TFMR. Although having read a bit more about what's meant to happen, I'm even more worried that it won't work for me because of the septum. Ah well, will wait to talk to the consultant tomorrow. I was told that this wouldn't be left hanging over me, whatever needs to be done, so I'm hoping things will be done by the weekend, whatever.

Of course, I'll join you if you start a fresh TFMR thread. It really helps to talk to others who are going through the same thing.

Thinking of you xxx

OP posts:

Pizdets · 14/08/2012 18:41

Hi mummy, thanks for thinking of me. Sorry to hear your folks are being weird, I'm sure they will have meant well. I contacted ARC yesterday who were wonderful and a hit of their leaflet really stood out to me - (paraphrasing) that it can be extremely hard for the grandparents because they have to deal with the loss of a grandchild and also to see their own child suffering so much. I'm sure the offer was meant with the best intentions, even if it was badly thought out!

So the genetic councellor confirmed what we gleaned from the phone call yesterday...that it's a very rare deletion. Kind of like downs, it can be more or less severe, but they have no way of knowing how it will turn out. We have also taken the decision to terminate. Booked in for a surgical termination (it's my first pregnancy and don't think I can bear the idea of giving birth for the first time to a dead baby) on Thursday.

I was thinking I'll start a new thread for tfmr, if you'll join me? Katie, I did look at the other thread and saw how much support people have drawn from it, it's wonderful, I just feel like it's 'someone else's' because it's been going so long. Or maybe I'm bonkers. Quite feasible right now.

Right, sorry for the essay. Mummy, thoughts with you and much love. Are you booked in yet?

Piz

AdiVic · 14/08/2012 17:01

Hello - just seen your thread, not been on here for ages. Feb 2011 we had 1 in 2 chance, and it turned out to be bad news, We chose to end the pregnancy for various reasons. It's so hard, and such a horrid time - I hope you are bearing up as best you can. There is light at the end of the tunnel. Hang on in there, and good luck - will be thinking of you and I wish you all the best and massive hugs xx

mummymonkey08 · 14/08/2012 16:23

Pizdets Did you manage to see the genetic counsellor today? How did it go? xxx

OP posts:

katiecubs · 14/08/2012 08:36

Oh pizdets i'm so sorry to hear that, hope you are doing ok xxx

Mummy i'm sorry your parents are making things difficult for you, it must be hard when you have already been through the pain of making such a difficult decision. There is a long running thread below which does not seem to have been as active of late but was of great support to me when i was going through similar: -

www.mumsnet.com/Talk/antenatal_tests_choices/1214853-Antenatal-support-thread-for-women-who-have-chosen-to-terminate-7

freshfruitsalad · 13/08/2012 23:44

Sorry to hear pizdets :(

Mummy; that sounds really odd considering their age, hope they come round to the idea, thinking of you this week xx

mummymonkey08 · 13/08/2012 20:39

PS Pizdets Of course, I'm here as well if you need to chat x

OP posts:

mummymonkey08 · 13/08/2012 20:38

Pizdets So sorry to hear your news. Update us after you've seen the genetic counsellor xxx

As for me, we're as good as can be expected. Although yesterday my parents did spring the shocking offer to raise this child (bearing in mind my mum and dad are 72 and 66). They said they were making the offer because they loved me, but as we'd already been through a horrible three weeks or so and made our decision - a decision that we believe is the right decision considering our other children (4yo and 8mo), I was upset that they didn't respect this and support us fully, rather than try to change my mind.

Anyway, we're going ahead, and it's going to be a tough week.

Is there a separate board on here for TFMR?

L x

OP posts:

newbie6 · 13/08/2012 17:34

pizdets - so sorry to see your post. I hope you get some more answers tomorrow. x

minipie · 13/08/2012 17:19

Oh Pizdets I'm so sorry to hear that.

Pizdets · 13/08/2012 16:47

Hi Mummy, just wanted to update you. Full results came through today. The gentic councellor is on holiday today so can't see her until tomorrow, but it wasn't good news. Looks like the very, very rare stuff that the full karyotype can throw up has come up in ours. Needless to say we're gutted after getting the all clear from the rapid results.

If you want someone to talk to this week, I think we'll be going through the same thing, so here if you want to chat.

Piz

newbie6 · 13/08/2012 14:46

Hi mummymonkey08 - just wanted to let you know I am thinking about you today. x

Pizdets · 11/08/2012 10:16

Hi mummy, sounds like it went ok and sure they'll continue to be supportive as they get their heads around it. Hope you can try and have a calm weekend, will be thinking of you.

freshfruitsalad · 10/08/2012 22:50

Sorry to hear mummy, everyone's decision is unique to them, our baby was tried for for 2 years and is our first so our decision was based on the fact that we may not get another go at it
Even so, we had people surprised that we were going ahead with pregnancy, as we were very open about it; we needed the support.
Xx

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!

OP posts:

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

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

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

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

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.

OP posts:

Pizdets · 10/08/2012 14:10

Fingers crossed for you!

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katiecubs · 10/08/2012 08:42

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

minipie · 09/08/2012 12:09

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

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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