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Original poster

Downs screening high risk - reassure me please

40 replies

evansmummy · 21/04/2011 10:44

Just got a call from the hospital to say that teh Downs screening results have put me in the high risk category. I have an appt in an hour and I am absolutely distraught. I just need someone to calm me down please.

OP posts:
lljkk · 21/04/2011 10:46

What are the numbers?
High risk means higher than 1/300, which means 299/300 risk of no DS, if you see what I mean. In most areas of life, we'd consider 299/300 odds to be very reassuring. Ignore the language and think about the actual numbers, maybe?

DuelingFanjo · 21/04/2011 10:48

did you have a full nuchal test with scan and bloods on the same day?

If your risk is high you can have the cvs or amnio. I had the amnio and it wasn't too bad, Also try the snte-natal tests/choices board.

Original poster
evansmummy · 21/04/2011 10:49

Yes combined scan and bloods. I am bricking it about making this decision

OP posts:
DuelingFanjo · 21/04/2011 10:49

sorry, ante-natal.

DuelingFanjo · 21/04/2011 10:50

what was your result? don't panic. I was 1/80 but had the amnio and myy son is fine.

Dropdeadfred · 21/04/2011 10:51

My friend was told this and everything was fine - good luck

Cattleprod · 21/04/2011 10:52

Wait until you know the actual numbers, as lljkk says.

How old are you, if you don't mind me asking? If you are 'more mature' the risks can be significantly skewed just by your age, whereas having exactly the same nuchal/bloods for a younger person wouldn't flag up as 'high risk', if that makes sense.

I really hope everything goes ok at the appointment. If you need support or information there's an 'antenatal tests and choices' topic on here with loads of people who have been through this already.

Original poster
evansmummy · 21/04/2011 10:53

Not sure of the exact result. Will know more after the hospital I guess.

OP posts:
Cherrybug · 21/04/2011 10:53

Different areas have different cut offs for high risk. It will depend on what your risk is as to whether you feel you want to have invasive testing (CVS or amnio) to find out for sure if your baby has downs syndrome. If your hospital has told you that you are in the high risk category then I suspect you will be offered further testing. As invasive testing carries the risk of miscarriage many people often balance this risk of mc with the risk they have been given for downs syndrome. So for example, if you have been given a risk of 1 in 250 this is a lower risk than the risk of mc and as such many people in this situation choose not to have the invasive test.

Antenatal tests and choices section of MN will be a good place for you to post if you want more info and advice and ARC charity based in London have a helpline which is very helpful.

lljkk · 21/04/2011 10:55

I know someone who got a 1/5 risk for DS, she refused all tests, baby born without DS. Similar story for someone whose baby had at least 5 soft markers on 20 week scan, had an amnio, no chromosome problems at all. Baby born with the oddities, but nothing that couldn't be treated successfully.

Then again, not hard to find stories from people who got a 1/3000 risk... and their baby turned out to be the one.

So I think you have to look at it as a process.
So sorry that you're going thru this. :( I hate it when people say they are beyond X point in pregnancy and therefore they can relax now, all will be fine... and I'm thinking, "No, the whole thing is a journey with unexpected twists and turns." Not that people should be uptight, that's pointless, but you can never take any stage for granted, either.

blackbutterfly737 · 21/04/2011 13:06

My risk was 1/5 and following amnio no chromosome problems were detected. It was HARD to hear such news and then I calmed down by thinking 1/5 is 20%, so 80% risk all is well. Currently 18 weeks.

Hope this gives some reassurance.

pipoca · 21/04/2011 13:50

I had combined bloods and nuchal fold give me a 1 in 68 risk. Had an amnio and the result was negative. Due next month. Fingers crossed for you.

Chynah · 21/04/2011 14:08

Mine was 1:12 risk after combined blood & nuchal on same day @ FMC. I had CVS and got all clear. DD is fine and has just turned 1 :)

Cattleprod · 21/04/2011 14:19

I wonder how evansmummy is getting on. Hope she's ok.

BikeRunSki · 21/04/2011 14:31

Evansmummy - Are you there? How did you get on?

Original poster
evansmummy · 21/04/2011 17:20

Sorry all, thanks so much for your messages of support.

So I have a 1:23 risk, much higher than I thought it was gonna be, though I don't know why I thought that. It's come as such a huge shock, I'm in a state, can't stop crying but have to hold it together as DS is around. Hospital were great, very helpful. We decided to go for the amnio, booked in for two weeks time. Will be an agonising wait, but hopefully will be able to calm myself down a bit and put it away in my mind as much as possible.

Will have a look at the other board mentioned, and also the ARC website - the hospital recommended that too. Thanks again.

OP posts:
2BoysTooLoud · 21/04/2011 18:36

Are you beyond the date for cvs? 2 weeks seems a long wait when you are worrying. Take care.

Original poster
evansmummy · 21/04/2011 18:46

No, I have until next Thurs for CVS. But with the increased risk of mc we had decided on the amnio. We were also told there is a greater risk of no result with the CVS, which did affect our decision. I'm only 13+2, which is why the wait for the amnio.

OP posts:
rushrushrush · 21/04/2011 18:48

I had a 1:2 risk with nuchal scan and following CVS, we were told our dd was fine. She's now just turned 6 and is happy and healthy [big grin].

Original poster
evansmummy · 21/04/2011 22:16

Thanks everyone for sharing your positive stories. I am gonna try not to dwell on it for two weeks, whilst hoping for the best and preparing for the worst. I have found the ante-natal testing board and will probs post there.

Thanks again.

OP posts:
mumofethan · 21/04/2011 22:45

Hiya when you look at the antenatal tests page you will see my recent thread about getting a 1:70 result. Was absolutely bricking it particularly already having one as you do. All worked out but so scary. Please feel free to PM me if you have any questions or want to vent about how you are feeling. And don't forget you have a 95% chance everything is ok. The other board can be a bit quiet but people are lovely there. Thinking of you x

Cattleprod · 22/04/2011 10:23

Sorry you've got a high risk, and such a long wait.

Did they say what made your risk higher? Was it a large nuchal measurement or your bloods? Just wondering if it would be worth having the quadruple blood test to see if the result is the same, before you have the amnio?

And remember that you have a 22 out of 23 chance that everything will be ok.

Original poster
evansmummy · 22/04/2011 14:03

The measurement was a bit high (3.4). One of the hormones was a bit high, one was a bit low. They didn't mention a quadruple blood test, I don't know what that is. I am slowly working my way through the info on the ARC website, which is super helpful, I presume I will find more info on there. Thanks for your post, I'm trying to remain hopeful.

OP posts:
Cattleprod · 22/04/2011 16:08

The quadruple blood test is just another screening test they can do. I think they do it if the nuchal measurement isn't available for any reason. I don't know much about it, whether it is more or less accurate than the nuchal/blood test that you had.

I know they are developing a diagnostic test for downs, which they hope will mean that amnio and cvs aren't needed in many cases. I'm not sure if it's available yet, but have seen it mentioned in the paper and on here.

I hope everything turns out ok. Please let us know how the amnio goes. I'm sure everyone on this thread will be thinking of you and sending good wishes your way.

blackbutterfly737 · 26/04/2011 14:07

As I said earlier my risk was 1:5; this was due to my age (41) and my hormones which displayed a pattern common in Down's pregnancys - high HcG (4.13) and low PAPP-A (0.44). Normal levels should be 1 MoM for bothe. My nuchal fold was normal at 1.2. Results of amnio came back normal.

As Cattleprod mentioned in the future there will be an alternative blood test to test for Downs. The trails are ongoing and after my amnio I was asked if I would like to take part. I said yes, and had to give a blood sample. They made if clear the results would be too late to help me in this pregnancy, but may help other women in the future.

Thinking of you xXx