Risk of Downs...

[curiousgeorgie]

Hi everyone...

Today I got a downs risk of 1 in 508.

I really need to know if this is particularly high as I remember my risk from my DD (2) being 1 on thousands and thousands....

The measurements from the scan were all fine, it seems its my blood work that's made my risk higher.

I'm 30 so my basic risk should be 1 in 900 but its gotten worse.

I don't know wether to be happy and tell everyone or worried?

My risk was 1:12 and amnio showed no Down's syndrome. It's natural to worry though! Lots of people on here have been to fetal medicine centre in London (in fact my midwife went when she was given bad odds) she had very detailed scan with specialist who told her there was nothing to worry about, other option is harmony test which is also offered there, more info about it in antenatal test section on here.
Hope that's some help.

As far as I know anything greater than 1 in 250 is considered low risk. I would be happy with that, I know you can get much lower risks, but you're not high risk by any means. I have a friend who got a 1 in 40 risk with each of her three children (she went on to have amnio's due to the high risk and all 3 were fine), to me that would be a ratio to worry about, I would be happy with what you've got.

I also know that a lot of health boards don't give an individual ratio, they just tell you if you are high or low risk.

With my first I got a generic - low risk classification, so just think if that was your board's policy, you wouldn't be worrying at all just now :-)

Firstly, 1 in 508 is still only a risk of 0.2%. So you have a 99.8% of everything being fine. Does that make it sound better?

I got a risk of 1:90 at age 30 because of my blood work (nuchal fold was normal - had also gotten 1:1000-something with my daughter two years earlier).

Instead of heading straight for an amnio (as the NHS was pushing for, despite our risk still being only just over 1%!) we went for a private scan which looked at a lot more things than just blood and nuchal fold (heart, nasal bone etc) and our risk dropped to 1:3000-something.

I was told that some women just have 'weird' blood - they have odd levels of hormones in pregnancy which don't mean anything bad, it's just how their bodies react. If you're only looking at blood and nuchal fold, the bloods take on a large importance and so 'weird' bloods mess the risk ratio up. However if you look at lots of things, the importance of bloods decreases.

As a result, if we have #3 we won't bother with the NHS test, since then my age risk will be even higher and my bloods predictably bad, so we KNOW my risk will be (likely inaccurately) high.

So personally I wouldn't stress at all.

Personally (and this is always personal choice and attitude to risk and also whether you'd actually seek to terminate for Down's even if you knew) I would seek further testing at 1 in 508 as I would not be comfortable with it, though plenty would be.

I would go to the Fetal Medicine Centre (amazing place) for their detailed scan and blood work (same day results) which might provide clarity (my NHS scan last pregnancy had far worse odds than the FMC one which was more detailed with more sensitive machines). Or consider the brilliant new blood test the FMC are offering - The Harmony Test. It is £400 (ouch, but same price as a private CVS or amnio) but gives test results which are only just short of diagnostic (99%) within 2 weeks. If you look here on Mumsnet you'll see more info about it, or call FMC?

I was similar to you, I had a risk of 1 in 17,500 with ds1 and 1 in 250 with ds2. This was earlier this year, I too am 30. There is only 20 months between them and it was a bit of a shock. Anything over 150 here is considered low risk so I didn't get offered amino or cvs anyway.

When I was worried my midwife asked me if I played the lottery. She said that on that basis you were banking on being that 1 in however many millions. She said that even if it was 1 in 1000s someone has to be that 1. Low risk is not no risk. A friend of a friend has also had a baby with Downs and her risk was 1 in 20 something thousand - she was that 1.

Like someone else (sorry on my phone and can't see who) you're risk is still very low. You could maybe push for further testing if you wanted. We didn't but that was because it wouldn't have changed what we would have done but I totally understand that it may be very different for others.

For what it's worth, ds2 was born 4 weeks ago and hasn't got Downs.

Decent odds. An amnio carries a risk of misscarriage of around 1 in 100. You need to weigh the odds up. A more detailed scan might help put your mind at rest but sometimes the more you look the more you find and usually these are of little significance but can raise anxiety.

Contact www.arc-uk.org/

They give great advice and info in this area. Good luck.