High risk down syndrome

[Alisid]

Hi I had my results back yesterday from my blood test that I had at my 12 week scan, they came back high risk for downs 1:98
or 1.1% chance. I don't know all terminology but the midwife said the measurement from back of neck was fine my hormones in blood were fine and there was no detection of downs in my blood the only thing that she thinks made this result is my age (I'm 42) I had bloods done yes5for NIPT test so now it's the 10 day wait, im 1 day in and I feel l8ke I'm going crazy, I can't think about anything else, I feel so sad, my husband is trying to help me be positive but I'm finding it hard especially with having had 2 miscarriages in the past year. Has anyone got any advice or similar stories to share
Thanks x

hi @Alisid , I had this situation last year with my little girl, however my risk was much higher at 1 in 14. I posted a thread in here (May 2021) with lots of replies so worth looking at. I too was offered and took the NIPT, that 10 day wait was the worst of my life! Thankfully my results came all back low risk and she was born without DS.
Nothing anyone can say will make your wait any easier, but try and look after yourself, baths, chocolate, films, cry if you need to, and try and get some rest too. I spent the whole time so
stressed making myself ill, and then when results came back fine I was so upset that I had been so stressed the whole time as stress is not good for the baby. I then had my baby at 28 weeks due to severe pre eclampsia and was even more upset at how I didn’t get to enjoy my pregnancy. The hospital tests are notoriously unreliable, so the odds are in your favour. Stay strong mama x

Also lots of people recommended the charity Arc, apparently the helpline is really amazing x

If you flip it round, there's a 98.1% chance of baby not having DS.

I had an NIPT done privately before I even had my NHS 12 week scan because I knew my age would automatically mean high risk. The wait was awful but it came back more quickly than 10 days and turned out to be fine.

Sorry poor maths! A 98.9% chance of it being ok.

There are lots of really lovely children with Downs Syndrome featured on Instagram, beautiful, happy families with beautiful, happy kids. My friends son has DS, he's magic! Might be helpful to see. (Although I'd still say your 'risk' is very low). It's still a difficult place to be. Hope you feel more relaxed soon.

Hi, there's a few of us currently waiting for results over on the antenatal tests section .
I'm 38 my results came back as high risk 1:6 for DS. Currently waiting for my NIPT results (it's been a week). The wait is excruciating.

Hope you're as ok as possible xx

I think the same sort of risk factor will come back for me at 44. The way I see it is you have to go through the tests and chances are things are going to be okay. The odds are still massively in our favour. It's age that pushes the risk factor up, regardless of anything else they measure, which given the factors they are working with also feels erroneous in the bigger scale. I guess someone has to be that 1-2%, but chances are it won't be you or me. I understand there is still that little voice of doubt and that's why you / we go through the tests, because they narrow down those odds almost completely.

Instagram is hardly a good bellwether of the reality of life with a child with Downs Syndrome.

Hi,
I am going though the same at the moment.
Mine was 1:70 of DS, I am 35 years old.
We have decided to take a CVS which I have next week, and absolutely worrying about the whole thing, and like your self it's very upsetting, and so many decisions that you have to make about which tests to have.
Like you send I at the moment holding on to the chance baby will be all ok, and tests come back negative.

I had my results back today, they are low risk, whoop so happy 😊 xx

Congratulations, hope you can relax and enjoy your pregnancy now.