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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Downs Syndrome Risk Factor

40 replies

Bazoo23 · 01/02/2017 17:25

Hi, I don't know if I'm being silly but need some advice.
Got my combined screening results today and my risk for down syndrome is 1:860. Which sounds good but I'm only just 26 so was expecting more like the 1:25000 my friends etc have got. The midwife said it is high for my age which worried me even more. I'm just panicking and need some advice please.

OP posts:

GoesDownLikeACupOfColdSick · 01/02/2017 21:43

I know it's stressful, but that really is a v low risk result.

Imagine you have a bag with 859 white balls in it and 1 black ball. Now imagine trying to pull out the black ball without looking... !

If you are worried, look at the harmony test to put your mind at rest, but honestly, do try not to worry! And don't compare to your friends. That way madness lies.

mistermagpie · 01/02/2017 22:01

In my area you don't get a score, you literally just get a letter saying 'low risk' (or not in some cases sadly). When I asked my midwife why, she said it's because of exactly this situation when people drive themselves mad analysing the numbers and causing themselves more anxiety and stress than is necessary.

It really is a low risk figure. Take comfort from that and try not to worry.

Original poster

Bazoo23 · 01/02/2017 22:07

I said this to my partner mistermagpie I think a letter just saying low risk I would have breathed a sigh of relief and moved on, it's the number and comparing to other numbers that's driving me mad.
I think if I'm still worrying in a couple of days I'll look further into the Harmony.
I'm so happy to be pregnant and feel guilty even thinking like this.
My little brother is severely disabled and he's the most amazing person ever , I wouldn't change him for the world, so I know a child with additional needs isn't the end of the world, I'm just prone to worrying and so I want everything to be ok.
My midwife advised to look at it percentage wise it works out around 0.1% so it is still very low.
Mumsnet is such a supportive place, you're all brilliant.

OP posts:

RMC123 · 01/02/2017 22:47

With my first DS ( nearly 16 years ago!) my bloods came back with a risk of 1:250. It was exactly the same risk attached to the amino. (1:250 risk of miscarriage. That was considered high risk. I did have the amino mainly as I was ( and still am ) an SEN teacher and I just wanted to know. I think I would still have continued with the pregnancy had the amino been positive for Downs but I needed to prepare. I was only 25 at the time and to get a high risk result was a real shock. Everything was fine and the Midwife told me that the risk was probably so high as I had been so sick in pregnancy. I had three more children and each time we paid for a nuchal test and I was convinced the double test ( blood test as was then - not sure if it's the same now?) would throw up a high risk result.
Your result is very low risk but only you can decide what is low risk enough for you.
Good luck x

Bluebellevergreen · 02/02/2017 12:35

OP I dont think it is the number but the way you handle worry.
My test cane back 1:710 and I was told low risk. Back then I thought great, and didnt do any further tests.
Then I started worrying because people said it was not diagnostic and I could be the 1 and it has happened to lots of people...
The problem is that I am a worrier and I suffer from anxiety.

So at 38 pregnant now I am still in hell.

I cant wait for her to be out.

You could tell me over and over how it is a very low number but the point is that I will still worry.

If I could go back I would have the tests. And then I would worry about another thousand things that can go wrong with the pregnancy.

Very personal decision... we are all different

snapple21 · 02/02/2017 20:45

My risk was 1:330. I was 22 at the time so also felt concerned. I had an amnio and it was confirmed that my baby had Down syndrome.

Original poster

Bazoo23 · 23/02/2017 13:02

Hi all thanks for your help and advice.
Just resurrecting this thread as seen the midwife today and got given the paperwork from my blood screening.
NT - 1.3mm
HGC mom - 2.35
PAPPA mom - 0.43
My blood levels aren't encouraging are they?

OP posts:

HN42 · 23/02/2017 20:38

I wouldn't worry, your risk factor is still really low - might be more helpful to look at it from a percentage risk which is something like 0.13% risk for you. I am having twins and one was given 1 in 85 (which was still only a 1.17% risk) while the other was 1 in 730, we saw the 1 in 730 result as a relief, but went for harmony test to rule out down's risk for the one with 1 in 85 risk, and both came back with 1 in 10000 risk as a result of that test. Odds are just more scary sounding so sometimes it helps to put them into a percentage.

Original poster

Bazoo23 · 23/02/2017 22:15

You're right that does sound better. Do you mind me asking how old you are? You don't have to answer! Congratulations on twins, bet you're over the moon.

OP posts:

Original poster

Bazoo23 · 11/08/2017 10:35

Just coming back to this to update, had my gorgeous little boy 2 days ago, he does not have Down Syndrome.
After my initial stress I decided what would be would be, but I am of course over the moon he is perfectly healthy
Thanks to all taking time to reassure me.

OP posts:

WineAndTiramisu · 11/08/2017 17:10

Congratulations!

Mum2oneds · 11/08/2017 17:27

My best friend was chatting about this the other day. When she had her now three year old she had the screening and it came back very high.. She was 30. They said about the amneo thing and she declined due to risk of mc and various other reasons. Her mw said we'll I am telling you your child will have something wrong whether it's downs or something but be prepared he won't come out looking like your other two.. Her and her hubby prepared for this.. And guess what they were wrong he is a ' normal' ( Dont like to put it that way but couldn't think what else to say) little 3 yr old.. Sometimes they get things wrong on both ends of the scale. X

coastalchick · 12/08/2017 08:07

I'm thinking (not discussed with OH yet) about paying for a Harmony test. I'll be 39 at term and I just don't think we would cope with a Downs baby so would terminate. I know that this is controversial and feel awful for saying it - also don't want to get into a slanging match/debate on here as it has to be a personal choice for everyone - there would be nothing worse than bringing a baby you think you can't cope with into this world. Having early scan tomorrow then should have 12 week scan in next 5 weeks so guess I'll see if risk factors up then. Only thing is, we live offshore and Harmony not available here (I don't think at least - guess can ask midwife when see her next week) so we'd have to book for when we are in london on 21 sept so would really need to book soon as 12 week scan probs only a week before

AJPTaylor · 12/08/2017 08:20

I had the screening for dd privately due to my age. I think i would have terminated but wanted a decent calculation. As is had taken 3 years to conceive dd3 i only wanted amnio if i felt the chances of ds were high.
After the scan and bloods my risk went from something like 1:85 to 1:800. Once i saw that the nasal bone was present i just stopped worrying about it.

Ceebs85 · 12/08/2017 08:29

OP normally with harmony your local hospital would take bloods and send them off (think there's another company that offers thr same test too) so if you're worrying yourself silly that might be worth doing or asking the screening midwife about.

For reference though I got a 1:7 risk factor based on the initial screening bloods, nothing to do with age, had a CVS (cells taken from placenta) and baby doesn't have downs.

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