'High risk' of Down's after 16 week blood test

[Hungrymama]

I was rung today by a midwife to tell me that I've got a one in 167 chance of having a Down's baby according to my triple blood test. How bad is this? She termed me as 'high risk'. Could anybody out there convince me that it's not so bad????????

It isn't so bad - that's a less than 1 % chance!

Mmmmm, I know. I'm hoping the scan (in two weeks) will improve my 'odds'. I'm not really sure how this statistic compares to what is 'normal' for a woman of my age (36) - I've read different things in different places.

Hi Hungrymama,
I am 34 and was told the chance for someone my age is approx 1/450.

How far along are you? Are you too late for a nuchal scan?

Best of luck,
MT

Sweetie, if you're too late for a nuchal scan, you should consider an amnio. It is a very easy procedure, not painful at all but will give you a 99% accurate answer which will make a world of difference.

Also remember - blood tests come back false positive (and false negative). In my case - my blood work was all fine and we ended up losing our baby daughter at 35 wks... later she was tested positive for Down... I was 27 back then... talk about statistics!

My point here - your test results could be just a glitch but you want to make sure for your own piece of mind.

The great news is that we got pregnant again, went through all possible and impossible tests, including nuchal scan and amnio and now have a wonderful and healthy baby boy.

Good luck!

Hi hungrymama - im 36 and on obstretric record it states that our age the normal age related risk is 1:297. I too was termed high risk at 1:207 as anything higher than 1:250 is termed high risk. At first I found it a bit of a shock, but then I thought to myself for every 207 women that get the same risk assesment as me , only one of those babies will have downs, so it didnt sound that bad afterall. The other thing I wanted to mention is that, one of the indicators they check for as an indicator for downs is aFP being low and aFP can be affected by your dates being out at all, it can make aFP apppear lower than it is. The best thing is at you next appointment is ask them to run through what is high and what is low. Good luck x

Hi! I got a similar result with dd1 (1 in 169)from the triple test, and everything turned out fine. I was 30 at the time, and there were also 2 'soft markers' on the scan. I spoke to ARC (antenatal results and choices) and they told me that for every 100 women who get the triple test done, 20 will get a 'high' risk result. Of those 20, 1 or 2 will actually have a 'problem'. I chose to have an amio in the end, even thought the risk of miscarriage due to the procedure was actually higher, just to put my mind at rest (I never got a result as they couldn't grow the cells, but that's another story). Just to say that there are many, many women who have been in your situation - my midwife says that for some women these results are actually 'normal' for them, and don't just happen because dates are wrong etc.. Hope this helps a bit and that you get the support you need - it's a cr*p time .

Thanks so much for all this!!!!

I won't be doing an amnio - not even for the certainty factor - because of the chance of miscarriage. My friend lost a baby through CVS and that's a hard deal to face whether or not the baby had DS. We'll be hanging onto our little critter whatever the outcome.

I'm 17 weeks so too late for a nuchal fold - you have to pay for them here in Wales so we decided not to bother. Hopefully the 20 wk scan (which I'm having at 19 wks) will give a clearer indication.

I know that it's just statistics and it's perfectly possible not to be that 'ONE' in the 167, but it's hard not to worry.

It's interesting that below 250 it's low/no risk and above it's 'high' - like a swing from one end of the scale to the other - 'no worries' to 'PANIC' in a few small numbers.

Sigh!

Hiya

Just to let you know, we took the same decisiona s you- no amnio- and never regretted it. not even bothering with tests this time around.

We're in wales as well, btw. Bore da and all that.

Hi it is low mine have been all different/ my 2nd ds was a 1 in 12 chance of downs than had another ds who was a 1 in 900 then my youngest dd was a 1 in 4000! im 34 was 28 when ds2 was born. Hope all goes well for you.

Hi

I'm due my baby in 3 weeks - yikes!
At 12 weeks I had the cub screening test like you and was told I have 1/11 chance of my baby having downs. This score I believe is very high risk but the midwife remains optomistic.

I didn't go for the amnio cos i had a miscarriage last year and didn't think i could cope with the guilt if it happened again.

I was told that they would keep an eye on me with various scans etc but from 22 weeks i've had no more which i suppose is normal.

I do occassionaly think about what the outcome might be but as I'm healthy and have 2 healthy girls then I'm sure I will be able to face whatever is thrown at me.

I hope all goes well for you!
TC

That's made kjg - I'm due in 3 weeks, have 2 girls already and you signed your email TC which is how I sign my post off!

One difference is that my eldest DD gas Down's syndrome, and I just wanted to offer Hungrymama my support in case there was anything you'd like to ask or know etc, at this, or any stage.

So sorry your friend lost her baby through a CVS but glad you are now sadly aware of the possible outcome and happy to have your child no matter what.

Having a child that happens to have Down's syndrome really isn't the end of anyone's world, it's just the start of a slightly different but equally as happy a one.

I meant 'that's MAD kjg'!

Hello. I live in Greece and here they take 4 factors into account in assessing the risk for Down's: age of mother, blood test, nuchal fluid and something to do with the bridge of the nose. I'm not sure of the procedure in the UK but perhaps you could have a scan so that the nuchal fluid and the nose bridge can be measured before you take any decisions as to CVS/amnio.

I recently had a CVS as my risk was 1 in 100 (this was before I got the blood test results but my doctor recommended the CVS because apparently the nuchal fluid and the nose are two of the most important factors). Although it wasn't a nice procedure (physically or emotionally) it didn't hurt. I was also told that the risk of miscarriage is often directly related to who performs the CVS (if they mess around a lot when doing it and put the needle in and out and poke around then this is more likely to cause miscarriage).

I hope you sort things out either way for a happy outcome.

With dd I had 1:240. We were very worried until I worked out the %, it's less than 1%. I know it's a very clinical way to look at it, and there's, still a chance but the way I looked at it was that I wouldn't bet on a horse with those odds. And when you have the anomoly scan the odds go down(or should that be up, no down I think if that's clear by a 3rd(i think) ours went to 1:360 which we were fairly 'happy' with IYSWIM. I didn't want to risk the amnio since the risk of miscarriage was higher than the risk of downs IYSWIM.

After the scan we felt much better that things looked ok, everything seemed fine to the scanner(can't remember the proper name)

Oh and the consultant was very 'blah' when they called us back to tell us the odds, kinda well we HAVE to call you back but don't panic. Really wasn't bothered at all so guess some people just have high risk. He did say that they weren't sure why babies came up high risk when they don't have downs. DD was absolutely fine when she was born. and don't panic that any other pg's will have the same risk. ds's was something like 1:50,000 Wierd! Oh and if it's of any relivance I had dd at 26 and ds at 28, just thought i'd mention it

Fingers crossed your scan gives you the peace of mind ours gave us

Actually it depends on where you live as to whether this is classed as high risk or not. In some areas they will only call bcak women who are at a risk of greater then 1in 100 whereas in others its 1 in 250. So if you lived in some parts of the country you might not even know that this had been the result and would be none the wiser. I gather that they are trying to get most to work to a 1in 250 level (I think inbetween my 1st and 2nd they changed the criteria here - but I didn't have any screening tests 2nd time round after the trauma of an amnio with the 1st which I regretted having). Not sure if this makes any difference to you but thought it might just give abit more info on it.

D'you know, this is why I love Mumsnet!!!
You get thrown a curve ball like this and it rocks your world and you don't know where to turn and suddenly, there online are loads of really lovely, lovely helpful people who've been there before and know just the right thing to say [warm, fuzzy emoticon].

Bless you all!

Now my initial shock has lessened I think I'm much more calm about it all. This baby is going to be part of our family early next year and will change our lives as irrevocably and wonderfully as our dd did almost five years ago. It would be great to go into parenthood with a guarantee of life time success and happiness but that just isn't available. Let's face it, not many of us have hit the teenage years yet - I don't suppose I'll be off mumsnet then!!!

Eddas - loved the 'betting on a horse' analogy - I'll remember that one I'm also a bit confused by the up or down stats thing but I got where you were coming from completely. Rightly or wrongly I think I'll chill out a bit if they say the scan looks okay.

Thomcat - you should know that I read all your posts on KatyH's thread and I found them hugely useful Really appreciate your offer of help/support and your openness. THANK YOU XXX

Oh and bore da, Peachy - that's about my limit as we've only been here for two years. That and, ffa pob and archfarchnad which seem to have stuck in my brain for unknown reasons!

Lots of love and thanks to you all
xxx HM

I came back high risk and went for the amnio after much soul searching. The average risk for someone my age- 37 is 1 in 200 so high risk anyway.

1 in 167 is pretty good odds and if you do go for further screening at least youwill know for definite.

Hia HM and Peachy- I'm North wales

I was given a 1:10 high risk for DS after the 16 week blood test and all the health professionals assumed I would want an amnio. For various reasons we decided against it and believed that we would be able to cope with whatever the outcome was. We did have a detailed anomaly scan by a consultant because I wanted to be prepared should the baby be born with DS. DS2 was born 4 months ago without DS.

Sometimes I think we rely too much on technology and statistics.

I hope you enjoy your pregnancy.

Just wanted to reiterate what thomcat said, Downs is not the worst thing that can happen. I can't help with any of the stats as I never had any of the tests. Had ds1 at 36 and ds2 at 39. Ds2 has Downs and, not to scare you, was also 10 weeks premature and needed an operation. As thomcat rightly stated, it may not be the journey you think you are going to take, but then, which ones turn out as you think anyway? But it will be alright regardless of what happens. Enjoy you pregnancy and yur new baby when it comes along.

PTA- when i was going through it I read loads of threads by thomcat- i also rememebr threads from years ago when her dd was younger and tbh I took great comfort from tc. I wasn't scared of downs but was scared of Edwards- I have known 2 babies be born with Edwards and I have to admit it scared me

The truth is there are so many things that can 'go wrong' with pregnancy and childbirth that if we were all issued with a list of possible problems just before conception probably no one would bother! I am blissfully unaware of most things, don't even want to find out about 'Edwards'!!!!! But like you all say, most things that come up are things that we get through one way or another. I'm getting better at relaxing and going a bit more with the flow. My DH is super calm which helps no end

Really appreciate everyone's comments - thanks xxxx

peachy, if your still about could you pop over to the antenatal thread? in the middle of my scan i was informed i was going to be having a triple test, i have decided i dont want it but would like some help on how to put this to midwife next week.

Sorry for going on so much everyone else, the other thread is so long i just wanted to explain my prob. Good luck with the pregnancy Hungrymama!

littleducks- it's a blood test- just tell ehr you don't want it. you don't need a reason

I was pg at 36,37 and now 40 and declined all tests as i knew that my risk would be high and i would not have amnio

its your choice