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Downs test 1/92 - is this a very high risk?

(15 Posts)
Ilovemydogandmydoglovesme Wed 14-May-14 10:41:08

Spoke to my lovely friend last week who's just discovered her downs test has come back with a 1 in 92 chance. She's a bit tearful and upset and doesn't know what to think. She's about 12 weeks. She's also got a six month old boy, fell pregnant again a bit quicker than expected. Want to give her some nice kind words of reassurance but don't quite know what to say, never been in this position my self. Is it a very high risk?

Shesparkles Wed 14-May-14 10:44:32

It's relatively high. When a relative of mine had a 1/64 result, until she had the amnio rsult, we tried to rationalise it by thinking that if it was a horse, you'd not bet on it! Probably completely inappropriate but it kept us going x

Ilovemydogandmydoglovesme Wed 14-May-14 10:48:59

That's a really good idea actually, her dh is a racing man! I might tell her that, thanks. smile

I've been googling it and lots of people that were given high risk have gone on to have perfectly healthy babies. It's just a bit of a shock to hear there might be something wrong I guess.

saralou21 Wed 14-May-14 10:50:08

Hiya, I had a result of 1 in 75 but although classed as high risk I didn't bother with any other testing even though it was offered. Your friend has a great result in my eyes, unless it would make her want to terminate if she was the one id tell her not to worry.
ive just had my 20 week anomaly scan and everything was fine no markers for any syndromes found.
shes got to go with her instinct like I did.
hope this helped :-)

forago Wed 14-May-14 10:51:50

I think it is fairly high and many people would opt for CVS to find out for sure. I think the rough cut off point I was given was 1/100 or below. However, I know someone who had 1/3 and the baby turned out to have no genetic conditions (some time ago though in the early days of testing). I also know people with Downs babies who are thriving. Another friend had 1/10 and it turned out to be mosaic Downs after CVS and amnio - the placental cells had an extra chromosome, the baby's didn't.

Its not black and white unfortunately. Has she had the blood test resuls as well? That may adjust it up and be more reassuring? I had 2 CVS, they were fine.

Ilovemydogandmydoglovesme Wed 14-May-14 10:56:21

I think she's going for the CVS, is it called, next week. Where they stick a big needle in you. I'm very ignorant about all this, despite having two children, but I was low risk both times and never gave it another thought.

I want to be able to say something reassuring but correct!

forago Wed 14-May-14 11:09:26

I had 2 cvs and the tests are weird, but fine, tell her not to stress too much about the cvs. Where is she having it done?

Ilovemydogandmydoglovesme Wed 14-May-14 11:22:10

Thanks forago. Norwich. Thanks everyone for your kind words.

MissSmiley Wed 14-May-14 11:33:55

I had a high risk (1 in 40) result for one of my twins. The NHS refused to retest. I had a private scan and blood tests (not available on NHS) and the risk can back as 1 in 6000. The twin with the high risk had had the cord round his neck which had slightly bunched the skin giving a false reading.

WipsGlitter Wed 14-May-14 11:38:21

She needs to remember that the tests she has had done so far only give a prediction, the CVS will give a yes no. Has she thought about what she will do if it is a yes? Do you think you would be able to support her in whatever decision she makes?

mamababa Wed 14-May-14 11:55:04

In terms of all results it's relatively high but in percentage terms it's really not. It's 1.1% meaning a 98.9% of births would be fine. I had a 1 in 20 result and tried to focus on the fact that the chances of all being well we're still massively in my favour. I had an amino and all was well smile

Gen35 Wed 14-May-14 12:00:16

I really hope by the time our dc have their children the testing will be so much better, more accurate. Even if it were 1/4 you've still got a good chance of a healthy baby, but I agree with the horse analogy. Hope the CVS result is good for your friend.

Shallan Wed 14-May-14 12:09:44

Can she look into the harmony blood test? It's only available privately so far, but avoids the cvs risk of miscarriage.

sleepyhead Wed 14-May-14 12:19:15

All it means is that if there were 92 women with identical risk levels to her, they would expect 91 of those women to have a baby without DS, and one woman to have a baby with DS.

If her result had been 1:20000 then out of 20000 women with identical risk levels they would expect 19999 women to have a baby without DS and one woman to have a baby with DS.

Which is why the vast, vast majority of women with a "high risk" result do not have a baby with DS. They tend to set the cut off for "high" risk at around the point where the risks from a diagnostic procedure are higher than the risk of DS, so usually somewhere around 1:150.

1:92 is higher risk than 1:93 and lower risk than 1:91 - it doesn't really matter what is defined as "high risk" at the end of the day, it's about the level of risk she feels she can live with, and that varies between people.

Our risk ratio with Ds2 was 1:23 and we chose amnio (ds2 doesn't have Down Syndrome). Our personal cut off for carrying on without diagnostic testing was 1:50 (totally arbitrary) and I'd have had no real worries with 1:92 personally.

I hope her CVS goes well and she gets her results quickly - the waiting is the worst.

Ilovemydogandmydoglovesme Wed 14-May-14 19:48:40

The waiting is the worst, you're right. Her and her poor dh are both a bit upset by it all. I hope I can support her in whatever she chooses to do but I think you're right about it being unlikely that there'll be Downs. Even if there is, they'd both cope with it, they're that sort of people. It's just nice to know one way or the other so you can get your head round it.

Thanks for all your help. smile

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