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High risk downs result and NIPT experience

(10 Posts)
kocicka Thu 01-Dec-16 02:38:04

Hey all, I've just joined the forum because I wanted to share my recent experience with NHS combined screening and a follow up NIPT. I also just want to say thank you to everyone who has posted about these topics before (regardless of the outcome) because it was so reassuring to know that I wasn't the only one going through this even though none of my friends had before.

I'm 36 and this is my first pregnancy. My dating scan at 13 weeks was all good, NT measurement of 1.8mm and CRL measurement of 6.7cm I think. I got a call from the hospital two days after my scan to say my blood test results put me as having a 1 in 78 risk of downs syndrome (but very low risk of Edwards or Patau). I was really upset as I knew a DS diagnosis would probably mean a termination for us. I was offered a CVS and the hospital (Newcastle RVI) explained that the miscarriage risk at their unit was more like 0.1% or 0.2%, not the higher risk indicated on the NHS literature.

We opted to have a Harmony NIPT test done first at Babybond in Gateshead before thinking about a CVS or amnio and the results came back just under a week later by email. We were delighted that they were low risk (1:10,000) for all three chromosomal abnormalities they test for and we were also able to find out that we're having a little girl smile Obviously we didn't end up having CVS or amnio after those results. Anyway, it's been good news for us so far after a super worrying time but I just wanted to share that you're not alone if you're going through similar issues with worrying antenatal test results x

sweetchilli77 Thu 01-Dec-16 07:45:14

Exactly same as me, except was 1 in 5. All good after going to baby bond also. Also found my gender, girl too smile

I think the harmony is very good for getting more accurate results

Majority of the ladies on this thread have all been through same testing and got the answers they needed.Some not so good but never the less its given the ladies a way to be able to move forward. Those waiting times where the worse for us.

Congratulations btw. We had already looked in at baby bond for gender scan before we needed the harmony but still decided to go for it. To see my baby at 18 week from 12 was absolutely amazing. The changes where fascinating.

Snowdrop2016 Thu 08-Dec-16 18:40:00

Thank you both for sharing your experiences.

We've just got a result of 1:600 for DS which I realise is considered low risk, however we're still considering having the harmony test as it is much more accurate. It's good to hear positive stories.

user1483719818 Mon 16-Jan-17 11:18:26

Sweetchilli77 as I am 1 in 7 for DS it is reassuring to hear it can come back low risk from NIPT. I am waiting for my reults later this week and its torture not knowing...

SAMlady Mon 16-Jan-17 20:11:39

We've been through the same this last week.

I'm 40 and had 2.7 NT and 1.6 hcg + 0.99 pappa. I was given 1:95 days risk.

Luckily our area is trialling the SAFE test NIPT being available on the NHS for those coming back lower than 1:150. I wouldn't have known about it otherwise!!

Got the call today and the ds risk is 1:million!!! Such a relief.

If I'm pregnant again I would pay the money and go straight to NIPT, being 40+ just raises the risk so much in the screening and the worry is awful.

kocicka Tue 17-Jan-17 10:10:10

I'm so glad you got good news SAMlady and how lucky that you were in an area trialling the NIPT being available on the NHS. I know it's going to be rolled out everywhere in the NHS within the next two years probably but my screening coordinator told me that it would only be offered where the results of the normal combined screening test gave a high risk result.

I think I would do exactly the same as you if I have another as I'd be near on 40 so would just pay to have the NIPT privately at 10 weeks and just avoid the waiting at a later date and the chances of another false positive on the combined screening as the waiting was just awful and very stressful x

Justmaybe1 Tue 17-Jan-17 18:58:15

Hi ladies, I'm also currently waiting for the results of my NIPT, hopefully will get them before the weekend, this wait is agony!
I've been put at 1:80 risk of DS. My NT was fine at 1.50mm but my hCG was ridiculously high at 9.30 MoM and PAPP-A low at 0.51 MoM. After the sonographor said my NT was normal at my 12wk scan I thought I'd be ok to tell everyone about the pregnancy but now I wish I'd waited!
Fingers crossed everyone gets good results!

kocicka Tue 17-Jan-17 19:44:34

Justmaybe1 that's exactly how I felt, I wish I'd waited before even telling my family at 12 weeks but luckily I hadn't broadcast the news everywhere or I'd have felt worse.

Saying that I did tell some of my friends whilst waiting for the NIPT results that hadn't previously known and I was so pleased I did because they were a big support and very reassuring.

Keeping fingers crossed for a good result for you all smile

SAMlady Wed 18-Jan-17 18:24:24

Thanks Kokicha for your good wishes.

Like you I wanted to post as reading the posts from others that had similar experiences and the dreaded waiting time gave me so much comfort while I was stressing out. Thanks to the other posters!

Justmaybe1 Sat 21-Jan-17 07:08:28

Hi again, just to update, I got my long-awaited NIPT results yesterday (it took 9 days) and I've been given the all clear smile I am so so relieved. The wait was horrible, I felt like I was in limbo the whole time and couldn't make any future plans and didn't want to meet up with friends- which is not like me!
I pray everyone elses results come back as low risk too xx

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