Pregnancy screening says baby has high risk for Down Syndrome? Agonising wait

[lawoman2]

Just looking for some reassurance or people who have gone through a similarly agonising wait after receiving pregnancy screening results which say the baby may be high risk for Down Syndrome.

I'm 35 years old, have had an ectopic and a miscarriage before, and currently no kids. I finally got to my first ever 12 week scan on Friday with baby looking great and opted for the blood test to check for DS/ edwards thinking it would all be fine.

2 days later I get a call saying I'm being considered high risk, with a 1 in 109 chance of the baby having one of the conditions, which has obviously left me worried sick and in shock.

Had my NIPT test done today and have an agonising wait of up to 2 weeks. Already can't get out of bed, googling constantly and worrying myself ill to the point where I can't eat or sleep.

Also looking up stuff on Google which has been saying bad nausea throughout pregnancy can indicate an issue with the pregnancy and it's made me even worse.

How do I get through the wait? Has anyone else gone through this?

Sorry OP, that’s an awful wait. I can relate to feeling very anxious after repeat miscarriages and waiting for that NIPT result. Just remember that stats are on your side - you have less than 1% chance of your baby having the condition. Over 99% chance that everything is fine! Can totally empathise with the worry though. Focusing on the stats being on my side helped me somewhat, as well as any physical activity to burn the stress - walks, yoga, cleaning. Force yourself to get out. Remember that your baby needs a strong calm mum, you can’t let yourself just spiral into the Google abyss.
Best of luck to you x

Just remember that stats are on your side - you have less than 1% chance of your baby having the condition. Over 99% chance that everything is fine!
Changing the risk to a % does always make it sound less scary and give it better perspective. I think my first one was 1 in 88 which sounded really high. But once I worked out that was still only just over 1% it felt better. And was all fine.

It must be very difficult for you. I’ve not had an identical experience, but I have had a worrying scan and then a wait for tests and results. As to how to get through the wait, concentrate on what you can control. Make sure you stay hydrated, take your vitamins and eat something nutritious. Try to get outside for a while, even just a short walk. See if anything will take your mind off it for a bit, such as reading mumsnet parking threads, watching a funny tv series, reading a book etc. Keep repeating the logic of the situation-that the percentage risk is low and the NHS like to do extra checks on everyone who reaches a certain threshold, just to be thorough.

I hope you hear back soon.

At 1/109 the odds are still in your favour. I think my aunt was given much shorter odds than that and her baby was perfectly healthy.

There's a fantastic documentary by Sally Phillips called 'A world without downs syndrome" which is a useful watch. It's available on YouTube.

Hello. I’ve literally just been through this and found out my NIPT results today; low risk for everything, thank god!

The wait it horrendous so I totally get it. I had mine last Thursday and found out today. Six days of fretting. I was 1 in 143. Remember your odds are over 99% the baby is low risk for everything like mine. It WILL be ok no matter how horrific you feel. Then when you get good news you can celebrate.

I am 36 so same age as you pretty much. If I have another pregnancy(!!) I’ll be getting the NIPT privately at 10 weeks rather than go through this stress again. It’s about £400 quid but worth every penny in hindsight!

The wait for the NIPT results is agonising, all you can do is try to keep busy and do things to take your mind off the wait.

Good luck

My daughter had a nuchal score of 1:10 - I had an amnio and she was absolutely fine. She’s now 12 and perfect (well, almost!).

Hi op. I’m nearly 9 weeks pregnant and waiting on my nipt test haven’t had it yet. Just wanted to let you know my last pregnancy was Down syndrome.. I had a mmc and got the nipt result around the same time as the mmc . I carried that pregnancy to 11 weeks and I had no symptoms whatsoever . No sore boobs no sickness no nothing. Had more symptoms with the pregnancy that resulted in my dc a few years ago. Just wanted to say don’t worry about your symptoms they aren’t anything to go by.

I had a 1:17 chance of DS. The wait for results is so hard. My NIPT came back low risk, currently 31 weeks and everything is going well. I also had lots of sickness in first 10 weeks.

What a relief! Were your second results all okay in the end? I keep Googling things abut bad morning sickness being linked to T12 x

Bad morning sickness is pretty standard in pregnancy,every single one of my friends has been sick in the first trimester and some well into the second. Wait for the NIPT test and if not conclusive, go for an amnio.

If you didn't have morning sickness, you'd worry about that too as that's linked to a higher miscarriage risk. Google is not your friend here.

I was diagnosed with hyperemesis and basically bedbound with nausea and vomiting for 6 weeks. I’m 15 weeks now and been back at work since just after 12 weeks. No T12 x

Hi all,

Just wanted to update for anyone else going through this situation.

My NIPT results came back all fine and low risk! The midwife even apologised for how the original info was delivered by the nurse and highlighted that the NIPT test has much more accuracy as it comes from your DNA.

Hoping this might reassure anyone else in the same situation x

So pleased for you! Enjoy the rest of your pregnancy.

YAAAAAAY!!!! Enjoy your pregnancy and have a safe delivery, OP. Are you having a little boy, or a little girl?

@lawoman2 brilliant news! I’m so glad for you!