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1 in 7 DS risk, in a bit of a spin

15 replies

Catherinebee85 · 09/02/2017 20:52

Got a call this morning about my screening tests. I can't talk about this other than with my boyfriend and his sister. Unfortunately based on my blood results I am showing as higher risk of downs syndrome. I was given 1 in 7 or 15% chance. They had me in immediately. I left work in tears and someone have me a lift (literally 1 minutes drive lol). My colleagues are amazing.

Rang boyfriend before I went up to speak to midwife and he was annoyed I hadn't rung him straight away but hey, it was all such a blur.

My boyfriends sister is a very senior midwife and knew the lady I spoke to today. She also is friends with the top dog consultant who performs the diagnostic tests. I am booked in for a CVS (where they take cell samples from the placenta) on Monday at 12.30pm.

My nuchal measurement was 2.2 so I've been informed (unofficially) if it's mostly my bloods they're calculating risk from that's a slightly better sign as some off bloods may just be normal for me. My hCGb was 8.41 and my PAPP-A was 0.38 (so only borderline low). I'm 31 and this is my first pregnancy.

Feels like such a long wait for Monday and I don't really know what to do with my self.

OP posts:
savagehk · 09/02/2017 20:55

While 1 in 7 is high, that's still 6 in 7 in your favour. Good luck for Monday, hope all goes well.

Lixon · 10/02/2017 16:50

Hi Catherine,

Sorry to hear you're going through this stress, I know exactly how you feel. I had the cvs last week so if you have any questions in that respect just shout. It wasn't entirely pleasant but definitely bearable and certainly the right choice for me.

I haven't actually called them yet but arc are meant to be amazing for anyone is this situation, might help you get through the wait after Monday www.arc-uk.org/for-parents/counselling

The way I tried to think of it is that 1. Whatever is the case is the case, you can't change it now so try not to think about it too much/distract yourself with books/TV/whatever you can (although I know it's nearly impossible) and 2. The odds are in your favour so hopefully you're one of the 6/7.

Catherinebee85 · 10/02/2017 20:41

I'm trying to stay positive. Thankyou for commenting. I'm only 31 and I'm told my NT measurement of 2.2 is encouraging. It's going to be a long weekend waiting for Monday but at the same time I don't want it to come.

I dont want to tell anyone in real life as I don't want advice and opinions!

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NinaMarieP · 10/02/2017 21:06

I'm 30, and I had a 1 in 34 result a few weeks ago (after a 2.4 nuchal measurement) I know exactly how you feel. I got the call on a Monday and didn't stop crying until Friday when we got the all clear. (CVS was on thurs morning). I tried to go to work on the weds and burst into tears at 9.05 and was promptly set home.
It's so easy to convince yourself the worst will happen but you have a much higher chance of your baby being fine than not. It's hard though because you want to prepare yourself just in case.
All you can do is try to keep as positive as you can and know that in a few days you'll know either way and can start making whatever plans you need to.
Fingers crossed for you! Xx

sweetchilli77 · 10/02/2017 21:14

Hi, I was 1in5 going off my bloods...i declined the amnio and was too far for the CVS so had a private harmony. I came back as very low risk. Hopefully you will too x

user1483719818 · 16/02/2017 14:43

I had a 1 in 7 too from NHS combined screening and got private blood test which confirmed no chromosome abnormalities. The 6 in 7 really is in your favour. Good luck.Flowers

Catherinebee85 · 16/02/2017 15:24

Thankyou. I had the CVS and got the all clear. I'm going to seriously need to consider whether to have the screening next time as it caused so much stress and upset when it seems so many people are deemed 'high risk' when all is actually fine

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HN42 · 16/02/2017 18:37

Glad it came back all clear for you, I feel the same as you about the screening, it put me through a ton of unneccessary stress and crying only for all to turn out fine. The screening is changing next year though - I went for a private blood test to avoid harming my baby twins to get more definitive results (99.9% accurate compared to 75% accuracy of current NHS screening) and this test is being brought in on the NHS next year apparently so from next year much fewer women will need to go for invasive tests.

mjas · 16/02/2017 19:54

Hi, I was about to say that I had 1:7 risk fir DS1, and he has no chromosomal abnormalities and is very healthy 4 year old. But then saw you've got all clear already. I still remember the stress waiting - that's why I think I visit this board occasionally. So during my second pregnancy, to avoid that stress in case screening came back high risk again, I did harmony test and 10 weeks and they already had my results when I came for 12 weeks scan. It was so worth it! Even when it turned out it would have been low risk anyway.

NinaMarieP · 16/02/2017 20:08

Very pleased for you.

I too would have to seriously consider whether or not to have the same screening again if we had another baby. It was literally the week from hell. If it was more in line with the Harmony etc tests and based on more than statistics I'd feel better about it.

Roseandwine · 21/02/2017 00:10

I had the iona tests in August and it came back as basically 1 in a million chance for ds. Well, I sm currently sat with my newborn daughter in post natal ward, she is 4 days old and midwife feels her facial features have some soft signs. I am waiting in abject fear for the results. There always is the one, in the one million, and somebody has to be it...

Catherinebee85 · 21/02/2017 00:23

Oh my goodness Roseandwine. I'll be thinking of you. The results from my CVS took just longer than 24hrs so I hope the wait is quick for you too and that you get the results you want Flowers

Congratulations on your little girls arrival.

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BlytheofWindyWillows · 21/02/2017 13:32

Congratulations on your baby girl roseandwine. We had the same situation after my DD's birth, I know what a shock it is. Hope you are all ok x

curliegirlie · 21/02/2017 17:39

Congratulations Roseandwine! I didn't have a NIPT, but I was the 1 in 1900 from my NT screening. My daughter turned 18 months yesterday and she's healthy and absolutely wonderful.

Roseandwine · 23/02/2017 08:48

Thankyou so much everyone for the Hand-holding. We finally got out of hospital on Tuesday evening (she had been under the uv lamp for 4 days) and we went back on yesterday to have my c.section dressing changed and the pediatrician had the results which showed that she does not have downs. To say I am relieved that it is not something I have to learn how to cope with is an understatement

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