12 week blood tests are high for Downs Syndrome. How to I reduce my anxiety?

[Charlottie6]

I am in the U.K. and 31. This is my second baby. Last week a midwife arrived at our house whilst I was at work and hand delivered a letter outlining that we had a 1 in 71 chance of Downs Syndrome. We were asked to go to the hospital the following day.

Since then I have spiralled and feel like I’ve detached myself from my pregnancy. When I see baby announcements it makes me really sad as I feel I can’t do that now with all the worry. I know we have 98% chance that things will be fine but I can’t help think why is this so different to my first pregnancy, where I had a 1 in 100,000 chance. The fluid was fine at the scan (I think 2.6) but my beta was 1.67 and Papp-a was 0.67

I feel so lost. So scared. After our meeting at the hospital I had a NIPT. The wait is eating me up. I don’t know what to do to get myself out of this darkness. One minute I think I’m fine and the next I’m sad again. I just want everything to me okay. I want to enjoy this pregnancy. Is there anyone that can offer support? Anything I can do to help with my anxiety? I want to be a good mum to my 2 year old and be my ‘normal’ self. I have such a supportive husband but feel like I’ve closed off. I don’t want to add to his worry. Any advice from anyone who’s been through similar would be amazing. Thank you in advance.

I went through similar - as in, same results.

You need to be honest with yourself. I honestly wasn't unhappy at the thought of having a baby with Downs. As it was, I didn't but my child does have special needs. I wasn't after a 'perfect' baby - is there such a thing?

But if you honestly know you wouldn't love a baby with Downs, you need to think carefully about your next steps imo.

In all honesty, the wait is until the end. My friend ended up with a baby who had Downs and they didn't know until he was born (similar results, and then got told it was all 'fine' )

@CoastalWave I doubt your friend had nipt. She was told a high risk at the combined test but then was told that was fine nonetheless? I think you’d love your baby no matter what, but there are serious issues to consider, if you can watch your child suffer, have a poor quality of life throughout, possibly get dementia at 40, be left without anyone who knows them when you die, etc. I know some DS children escape all that but the majority will have serious issues and more than not, not just one.

@Charlottie6 your results don’t look that bad, the only one possible a bit outside the range is hCG. Papp-a is at the lower end but still within range (>.5) and the nuchal scan is fine. I’ve read the hCG is usually raised when you’re having a girl p.

I had very similar to you and was given 1:77 recently. HCG 2.2, papp-a 0.65, nuchal 1.7. I’m having another girl so maybe indeed the raised hCG is bc of that .

I’ve done the nipt too and it came back low after a week.

I was also given a high risk risk with my DD a few years ago, and nipt came back low then as well, and she’s fine. Because of the first experience it was easier this time, though it’s not easy, I kept busy, reading books, etc.

There is not much else you can do, except to accept you can’t completely put it out of your mind and just do your best. Fingers crossed you get a good result and it’s soon.

Hi OP. I was in exactly the same situation as you. I chose to have amnio as this was 28 years ago. It took 5 weeks for the results to come through due to admin errors, so I was 17 weeks when I got them. I just tried my hardest to put it to the back of my mind. I did tell people though because I felt I couldn’t pretend everything was fine when it so clearly wasn’t. In the end the result was negative. Wishing you well x

Hi @Charlottie6 how are you doing?

The wait is excruciatingly unbearable. I've just been through it. My combined screening came back as 1:6 for Down's syndrome. I had the NIPT and 14 LONG days later yesterday I got a low risk from it.

I have no advice about managing anxiety as honestly I was a wreck a waking up in the night having panic attacks etc.

If you wanted to speak to people with children that have Down's syndrome the PADS - positive about Down's syndrome Facebook group are really welcoming and supportive - they even send you a book so you can get an idea what life would look like. I found that helped calm me down a little even though I hadn't decided if I would be continuing the pregnancy or not.

I hope your results come back quickly and they are low risk.

Xxxx

I’m doing okay, thank you for asking. I’m just struggling with the wait and unknown. The midwife said it could be up to 2 weeks but usually a week. Today is the week since I had the blood test and every day I’m checking my phone. If it rings my heart goes. Every day at work when I have a quiet midnight I wonder if they have rang and if I’ll see that missed call on my lunch break. I just desperately want everything to be okay.

im glad you’ve got the result you wanted. Do you feel more at ease now? I feel like I’m not embracing my pregnancy at the moment which is really sad. I hope you are now able to enjoy your pregnancy x

Hiya what was the outcome? Hope it was positive for you I’m in a similar position waiting for NIPT results mine was 1:79 chance of DS x

Hiya what was the outcome? Hope it was positive for you I’m in a similar position waiting for NIPT results mine was 1:79 chance of DS x

Sorry @ashrenaex I’ve only just seen this. Our blood test came back low risk and we now have a healthy 6 month old. Hope everything comes back okay for you!