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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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iamstitch · 25/07/2012 06:52

Not sure what to say but couldn't read and run. Someone so much better than me will be along soon but I'll wait around and hold your hand x

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Iatemyskinnyperson · 25/07/2012 06:58

Same here. I have a SN child (ASD). I wouldn't judge any decision youd make. Squeezing your hand...

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OneLieIn · 25/07/2012 07:01

Here to hold your hand. Whatever you do will be right for you.

X

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Pizdets · 25/07/2012 07:36

Hi mummymonkey,

So sorry to hear your news. We've also been given 50/50 odds of there being something chromosomal wrong and it's terrifying. My placenta is in the wrong place so also can't have CVS, booked in for amnio early next week.

I don't think there's anything I can say to reassure or comfort you, but I've felt much the same as you...up days and down days, also wishing for a miscarriage (or that I'd had one weeks ago, which I know is pointless, but I'd have been more ready for it than for this!).

Just wanted to let you know you're not alone!

Piz

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mummymonkey08 · 25/07/2012 07:39

Thanks x

I've been up half the night with worry, and all I want to do know is sleep - but that's not really on the cards with a 4yo and almost 8mo...

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CinnabarRed · 25/07/2012 08:03

Thinking of you both, and you'll get nothing but support from me no matter what you decide. I don't know what I would have wanted if I'd been in your place.

MM08, is there a medical reason why you have to wait 2 weeks for the amnio? It seems so cruel to leave you fretting if it could be done sooner. Might a private test be an option?

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Pizdets · 25/07/2012 08:55

Thanks cinnabar.

Mummy, I also don't get why they've told you there's such a long wait. I could have had CVS last week at 13+5 and will be just over 15 when I have the amino next week. Can they refer you to a bigger hospital maybe?

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mummymonkey08 · 25/07/2012 09:03

Pizdets - obviously forgot to say good luck to you as well.

It's too late for me to have a CVS as I'm gone 14wks, so have to wait until I'm 16wks before I can have an amnio. The midwife did double check that it was definitely too late as I was so upset at having to wait for definitive news.

The waiting is the worst thing. I've never felt so scared and stressed in my life.

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CinnabarRed · 25/07/2012 09:06

Oh, poor you.

No, I get why you're too late to have CVS done Sad. I just don't get why you can't have the amnio immediately. I just wish, for your sake, that you could have the amnio today and get it over with. I was wondering if the delay is caused by demand for NHS services, in which case you might be able to get it quicker if you go private.

Thinking of both of you.

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mummymonkey08 · 25/07/2012 09:14

I suppose we could look into having it done privately. But DH is away for work a lot and the first appointment available with our hosp - who told me amnios are only done once mum is 16wks - is 8/8. I've resigned myself to the waiting now. At least I've a chance to compartmentalise and semi-forget about everything until then.

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CinnabarRed · 25/07/2012 09:19

Of course. Whatever you feel is best for you. It's a horrible situation no matter what.

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CinnabarRed · 25/07/2012 09:20

FWIW, I've just done a quick google, and it seems that you can have amnios done from 14 weeks - although your hospital may have a policy of doing them later.

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Ample · 25/07/2012 09:35

For what it's worth (and it may not be much) two friends of mine, in their mid thirties, were given high rates for DS after nuchal screenings. Each went on to have an amnio and results came back fine. They had healthy baby boys.

Not sure what test options you have here in the UK as we were living overseas at the time, but having comforted my best friend through those days and weeks for results; I agree the wait is agonising.
It is easier said than done but I would try to take it one day at a time x

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Pizdets · 25/07/2012 09:56

Hi ample, thanks for the stories, have read quite a few online and they do give me hope, but then I worry about getting my hopes up too much.

Mummy, thanks for the luck, feels like we both need it right now! My hospital (big London one but still NHS) does amino from 15 weeks, but I know what you mean about sticking with it, when they told us we couldn't have the CVS a couple of weeks ago, they did suggest I could be transferred to another hospital to have it done transvaginally (sp??) but we didn't push for it as it's pretty scary to be in this situation plus doing loads of unknown stuff (plus our consultant didn't seem v keen)

I'm so sorry you feel so stressed, can you take your dc out in the sun for the day and distract yourself?

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mrslurkalot · 25/07/2012 09:59

Hi mummymonkey08, So sorry you're going through this. I had high risk results in both my pregnancies, and I remember just wanting to go to sleep and wake up when the results were in. I can't recommend www.arc-uk.org/ highly enough, they were brilliant when I needed to talk things through.

I had an amnio with my first pregnancy and CVS with my second. The risks in my second pregnancy were higher with a 1:7 chance of Edwards. I preferred to think about it in terms of percentages so there was an 85% chance my baby didn't have Edwards. So for you there is a 50% chance your baby doesn't have Downs and a 94% chance that your baby doesn't have Edwards/Patau.

I am very, very lucky to have a stroppy 4 year old and a chilled out 7 year old, both of whom were born without chromosomal problems.

Please be kind to yourself. I still don't know what I would have done had our results been different xxx

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mummymonkey08 · 25/07/2012 09:59

I could and should take the children out, I know, but our 4yo is in a difficult phase so I don't enjoy taking her out by myself. And worry about having 8mo in the sun too much.

I'm wallowing, I know. Need someone to give me good shake.

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Pizdets · 25/07/2012 10:09

No! Wallow away! Today I feel better but Sunday I could barely get out of bed. It's ups and downs, be kind to yourself. I do find work is helping though, most people don't even know I'm pregnant so I have to be 'normal' and it does make me feel a bit more human, which is why I thought going out might help (luckily I don't have any dc to worry about, must be v hard for you)

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JugglingWithTangentialOranges · 25/07/2012 10:23

If you want a bit of a friendly shake today then remember the positive side of the stats MrsLurkalot mentioned ... a 50% chance of no Downs and a 94% chance of no Edwards syndrome. So, with the Downs it's a 50/50 thing. Also maybe remembering your thoughts that having a child with Downs could be OK .... some children with Downs seem to live a happy and contented life and are much loved siblings etc. within the family.

As for getting out in the sunshine today - that sounds like a good plan - doesn't have to be for the whole day ? Maybe a short trip to the park and sit in the shade with your baby would lift your spirits today ? Best of luck with everything.
Try not to worry while you wait for more clarity on things.

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JugglingWithTangentialOranges · 25/07/2012 10:26

Could you go out with friends eg. to the park ? Anyone in RL that might give you some support with this if you shared what you're going through ?

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JugglingWithTangentialOranges · 25/07/2012 19:45

How did your day go, MM ?

Hope you're feeling OK this evening ?

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mrslurkalot · 25/07/2012 20:43

How are you doing MM? Did you manage to get out? x

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mummymonkey08 · 25/07/2012 20:59

Aw, thanks for asking.

Today was actually a lot better than it could have been. Thought I would be spending it, wallowing, just trying to get through the day with the DC. But my MIL called and, of course, I broke down over the phone, so she came to see me with my FIL. DD was taken out for lunch, and my MIL looked after my DS, while providing endless cups of tea and toast as I intermittently worried, sobbed, and sniffled.

Boy is it going to be a long couple of weeks if I'm like this every day.

Now pondering girlie film and chocolate, but will probably try to have an early night.

Thanks again, girls x

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JugglingWithTangentialOranges · 25/07/2012 21:08

We've just been watching quite a girlie film, Martie and I - about a family having a dog, pretty uncomplicated - the DC's loved it Smile

Glad your day was OK and you had some company. Your MIL sounds like a good 'un Smile

Chocolate always good too Wink

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Pizdets · 26/07/2012 08:06

Hi mummy, pleased you had a good day, in-laws sound great, it's so good to have someone else to talk to, isn't it.

If it's any consolation I'm a few days ahead of you and I think I have calmed down a bit. I just don't think the body can take that level of hysteria for so long, really! But I still find it sneaks up on me, and I wake up still at 3am every day and spend the best part of an hour imagining getting our results...where we'll be, who'll take the call, how we'll feel, what will happen next. Need it to be over!

Sorry, not sure of that helps much but you're not alone!

Hope today is ok.

Piz

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Iatemyskinnyperson · 26/07/2012 08:53

Thinking of you MM and wishing you the best outcome... Pp has it right, our brains have a healthy way of knocking us into denial so we can get on with life!! If I were to think of the future I would be rocking in a cornerWink

A bid ((((hug)))) from me.

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