high risk of Down's

[vmcd28]

Ugh, the midwife has just been to the house to tell me that I am at high risk of Down's. So, the average for my age is 1:259, and my risk, based on blood test only is 1:183. So I KNOW that it's not a huge difference. And I KNOW it means 182 chances of all being ok, but I'm still scared cos it didn't even cross my mind that it'd be high risk.
HOWEVER, at my 13 week scan, the sonographer said she was being trained to do nuchal fold scans, but our health board doesn't officially do them yet. She didn't tell me any measurements but also didn't suggest anything might be wrong.
My confusion is, would she have told me at that stage that there was anything to be concerned about??

Any comments /reassurance/opinions would be very much appreciated. X

Hi WMCD, sorry to hear this, but as you say, the odds are still in your favour.

Can you phone the MW who came to the house and ask her if the risk profile you were givin was from the blood tests alone, or did they also include the information from the Nuchal scan?

From other posts, I've noticed people usually get told the nuchal measurment at the time of the scan???

If it's only the blood test this has been based on, can the MW find out the Nuchal measurment and re calculate your risk?

I didn't get the Nuchal thing done, I went straight to CVS at 13 weeks as other factors (my age, babies initial slow heart rate, previous m/c with trisomy14) put me a a very high risk (no number given exept, 1:40 for age and the other factors increased this risk). There are a lot of people out there who are given very high risks, but the tests come back clear.

If you choose to have a diagnostic test, I am happy to discuss that - it would be amnio at your stage, and I had CVS but the procedure is not to different, and the worries are just the same.

Depends how they define high risk. Some places say anything over 150, some say anything over 250. Chances are you'll be fine.

You need more info as to what has given them that risk factor. If it's bloods alone, then it's not very accurate tbh.

Phone the MW again and then you could always come back for advice. Try the Ante-natal testing board. It's full of very knowledgable women who have been through various forms of testing. Good luck.

I should add - the nuchal measurment (and presence of nasal bone) must have been recorded in the hospital notes by the sonogrogher? If the nasal bone was seen, and the fold size was small, this would lower your risk A LOT, and if you can get the MW to find out that information, you may not be put in the situation of deciding if you should do an amnio.

Thanks, both. Afaik, it would ONLY have been based on the bloods. She was "getting trained" in doing the nuchal fold scan, but was not allowed to "officially" do them. Therefore nothing related to this is in my notes. She had a good look at the brain, I remember, and said something to the effect that it looked ok.
So when I asked if I cud relax, she didn't really answer. So I don't know if I'm now being paranoid that she saw something but wasn't "allowed" to tell me, since they're not fully trained in this.

this is exactly why I am not having and bloods done. I couldnt take the worry. Hope it all works out ok for you.

i wouldn't class 1:183 as high risk tbh. if you go ahead with an amnio, there's a higher risk of a miscarriage from the test, 1:100.

with dd, my blood test came back as 1:123, had an amnio, all was ok but as soon as the needle went it, i wished i'd not done it. was so cross with myself for putting her at risk.

with ds, i refused all the blood tests. didn't need to know, didn't matter.

Well, I am 99.9% sure I won't gv amnio,regardless of what scan shows on Thursday. But I'm now looking at scan photos from 13w thinking the nuchal fold looks very think (when comparing it against various scan images online)

Are you sure about those numbers?

How old are you that "average for your age is 259"? it sounds like an improbably high average risk.

I'm nearly 37.
Absolutely sure of nbrs. The midwife had written them down before she came to the house.
When u say it sounds improbable, do u mean the nbr should be higher or lower? ?

I had DS when I was 38 and his DS risk was 1/250. Consultant broke the news to me really gently. I got the feeling that this was rather high risk.

Not that it bothered me that much, as I already had a date for amnio at that point. The only difference was that now the state was to pay for the amnio.

At the end of the day, these are all numbers. The question you need to answer is whether you and your DP/DH can live with a child with DS or another genetic problem. If you feel this is something you need to avoid, have an amnio whatever the risk figure. If not, don't.

I had DD when I was 28, and her risk of Down's came back as 1 in 30. Which came as a shock as with my first two DC the risk had been something like 1 in 1500.

I didn't have an amnio as I didn't want to risk miscarriage, and I knew that I wouldn't have terminated if we had had a positive result.

A friend helped me to put it into context like this:

11111111111111111111
11111111111111111111
11111111111111111111
11111111111111111111
111 11111011111111111
11111111111111111111
11111111111111111111
11111111111111111111
111111111111111 11111
11

All of those 1s are babies without Down's. The 0 is a baby with Down's. That is your risk. There are an awful lot of babies without!

BTW DD didn't have Down's. She was obviously one of the 29 in 30

I've recently been through exactly the same thing! My triple blood test results for this pg came back as 1:195 (I'm 33, 4 years ago when pg with DS my results were 1:1500, so I was shocked at the difference). We're in Wales & they consider high risk to be under 1:150, so I was never offered any further tests & as my DH said it's around 0.5% chance of having DS. However, at my 20wk scan the sonographer asked me about any test results & I told her & she was surprised I'd not been offered any other tests or at least info. My hospital care is in England, where high risk is classed as 1:200 or lower so I was classed as high risk to them!!! The sonographer got a consultant there & then to talk to us & he was really nice & said he'd squeeze me in for an amnio the following week if I wanted, but did mention the risk of miscarrying from amnio was higher than risk of baby having DS!! Feeling a bit flattened & shocked by what was happening, we just asked the sonographer to carry out the 20wk scan as thoroughly as she could looking for any signs of abnormalities. She did this but also remarked that you can have a perfect scan & still have abnormalities. In the end she said it did look perfect & she was thorough (she took about 30mins!). Her final comment was would you back a horse at 1:195??? We came home unsure what to do. But after research on the net, I've found out that approx 20% of triple test results are wrong (false negative, false positive) so if you factor that into your results you're even lower risk than you think. This is because triple blood tests are based on statistics hence the discrepencies. If you don't want an amnio, there are fetal specialist centres scattered around that can offer high detailed scans, probably at a price!! We decided that we'd not probe any further & what will be will be. It's not a nice position to be put in & I can understand why some people opt not to have the triple blood test, if I knew how unreliable it was I probably would have paid for nuchal fold scan instead.
I hope all these posts help put your mind at ease & make the decision of your next step easier.

I am 36 and my downs test came back as a 1 in 220 risk. I was told this was low risk and no further testing was needed.
I shouldn't worry.

The blood test alone is only about 60% accurate I think. Don't know why they bother with it tbh.

Basically, in an ideal situation they look at 3 factors

1. Age related risk- purely based on averages for mothers of your age. If you're 35 or over this will be more than 1 in 300.

They can then adjust this by looking at

1. Bloods (look for certain markers consistent with DS)

1. Nuchal fold and presence of nasal bone

Each of these give a probability which they use to adjust the age related risk.

eg I am 35 so my age related risk was 1 in 300. However, this was adjusted to an overall risk of 1 in 1500 taking into account the scan and blood results.

Most importantly, these tests are not diagnostic (only amnio or CVS can give you a definite yes/no answer). They just give you a probability which can assist in making decisions on whether to have further tests.

VMCD28 - My risk factor came back as 1:50. To say I was shocked and upset would be an understatement so I can completely understand how you are feeling.

I am 25, based on this alone, my risk factor would have been something like 1:1300. Nuchal fold measurement was 2.1 and nasal bone present. It was the blood test which hugely increased my risk factor.

We decided to go ahead and have the amnio and were due to have it on the 18/6 but my bowel was in the way because my uterus is still retroverted (this was at 15+4). We now have to wait until the 2/7 to have the amnio. This should be enough time for my uterus to have grown and push my bowel out of the way.

Just like you, I never in a million years thought this would happen. I spoke to my consultant in depth and he said that a scan alone can not give you a definite answer.

I have read so many threads on here, some women given risk factors of 1:2, 1:6 and everything has turned out great for them.

I have had a lot of time to think recently and the results of the amnio will not change the way I feel. I kind of have this feeling that everything is going to be ok.

Will be thinking of you x

Thanks so much to all of you for taking the time to respond with such thorough answers. It really mans a lot, and I do have to say that I feel a bit less isolated.

I have to admit I'm flitting between feeling positive and feeling very sad and scared. My 5yo ds is so excited about this baby, and I'm frightened for him too. I know a lot of you have had worse odds than me, but I feel like I'm in a state of shock and limbo at the moment. Almost scared to go to bed and be left alone with too many thoughts :-(

Just to update you all. I phoned hosp this morning, and they gave me an appointment for a scan this afternoon. I am very relieved to say that none of the soft markers were present. Altho this doesn't guarantee anything, it's very reassuring to us. I forgot to ask if that reduced my odds now, which I assume it did but don't know.
Thanks again, everyone. I know the odds were still in my favour, but after 2MCs and early bleeding etc with this pregnancy, I tend to be quite negative about it all when I'm given news that's potentially another problem

Pleased to hear you're being well looked after. Hopefully it's all good news.

How did it go?

Hi, no soft markers at all, so hopefully its all good. Not having amnio. Consultant didn't suggest that we should go ahead with it.
I did post an update earlier, but sometimes my mobile plays up, which is why u maybe can't see it x

That's great news! no soft markers = lower risk than the bloods alone suggest, and that would have taken you out of the "high risk" category (you were only just inside "high risk" based on bloods alone), so no surprise the consultant didn't suggest amnio.
I'm really happy for you

Thanks, oldmum42 - I'm more relaxed about it all now. x