High risk Downs result

[Kateg1983]

Hi, I am really worried. Today I was given my results from the combined test, nuchal 3.2 and hcg 4.3. Giving me a chance of 1in6 ds. I'm 36. We are having the NIPT test tomorrow and will wait for results but I'm not sure I can function properly until we know. Just wanted to talk to someone about it. Worried sick.

You poor thing - sending hugs, the wait is so difficult 😔 We had a high chance result (1 in 3) mainly due to increased nuchal (4.7mm) and my age (38). The NIPT came back low risk and then also had an amnio which was clear. We found out just before Christmas and then had to wait until NYE for the NIPT results - it was an incredibly worrying and stressful time so I really do empathise. Hopefully the results will come back sooner given that there are no bank holidays to get in the way etc. Thinking of you xxx

Thank you. I cant help but analyse my results although I don't really have a clue what they mean. I do know that the sonographer had a really really hard time getting the neck measurement and I feel like she almost gave up, it took her about 20mins because the baby was asleep.

Great that you got the all clear

Hi OP, like the above poster I also got a high risk result but went for an amino and it was clear. Fingers crossed for a good result for you too. The waiting is so hard.

I get so upset reading posts like this. It is truly terrifying but honestly look after yourself. I had very similar results and was even left on a dark room with DO as the city left us to "consider a sensible decision"

My high risk bump will turn 6 in June and dies not have Downs... enjoy your oregancy and take care x

Oh OP so sorry you're going through this. DD2 was 1/15 for downs and didn't have it. She's 5 now and totally neuro-typical.

Thanks guys

Hi OP,

I didn't have a high risk result but they found a limb deformity of my little boy at the anomaly scan and I was told it was probably a chromosomal disorder so I have to have the amino, the wait is dreadful but I got the all clear from the main 3 (including downs) after just 2 days so I really hope it's quick for you too. Try and stay positive 💛

Another person who's been where you are, it's truly the most awful time as you go to your 12 week scan expecting all to be ok. I was given a1 in 13 chance in November...aged 40 at EDD. Nuchal, 2.5mm, hcg 2.0 and papp a low at 0.37 at 13+2). Had NIPT done (as I was too late for cvs and too early for amnio) which came back as 'highly unlikely'. I understood that it's not diagnostic so knew we'd have to have the amnio if it came back high risk. All scans to date clear (I'm not 33 weeks and having additional scans because of the low papp a — an additional thing to worry about!). Good luck with the results, let us know how you get on x

Oh op, DD1 was also a high risk bump. Look after yourself, I sobbed for about a week after we got the news. I declined an amnio but she was born perfectly healthy with a paed present.

I a!lso want to add that you need to be very kind in yourself at this time. I made the mistake of trying to carry on as normal, throwing myself into work (which I couldn't do very well). Allow yourself the time to be upset, doubly hard at the moment because of the virus.

It’s such a worrying time, it’s normal to feel scared. We are waiting on NIPT results, but they have been delayed by the bloody virus and Easter weekend. Hopefully yours will be back soon, and that everything will be ok.

Thanks everyone. It's good to talk with people about it.

Can you book a private harmony test? That may be faster as it's private?

Ah, we have booked for the NIPT test tomorrow.

Great! We did ours two days after getting the dreaded phonecall. It did take 2 weeks to come back mind which was absolute torture. But we couldn't have done the amnio any sooner anyhow. Hopefully yours will be back in less than 2 weeks. Our hospital only released the results on a Thursday 🙄 so when I did the test on the Thursday it was unfortunately the full two weeks we had to wait.

@Kateg1983 I hope all goes well today. Whilst waiting for the results it does feel like time stops and at this time especially it will be hard in terms of not being able to get out etc. I wallowed a lot (we have a son and I had to rely on my husband to help take care of him during that time). Getting out for some fresh air did help a bit. Just be guided by how you feel. I hope the results come back quickly for you 🙏🏻 Re your nuchal measurement, I understand that anything below 3.5 is considered normal range and if it was tricky to measure then that may not be accurate.... Age does have quite a big impact on the combined screening. Do you know what your Papp-a was? Sending love x

I don't know the exact number but she said it was normal. I've been reading about the nt measurement and a journal said if baby has less that 3.5 then 9 times out of 10 they'll be fine. I feel like I'm les worried about it, on reading that but you still don't know do you. I keep flipping from positive to negative thoughts.

I was 39 and we had a 1/5 chance of DS in the years before NIPT. I declined the amnio as knowing our child would have DS would not have made any difference to our decision to proceed with the pregnancy. We took the attitude that there was a 4/5 chance that he wouldn't have it ...

He doesn't. He did have a cranial bleed which left him with SLD, he is ASD and deaf. None of those could have been predicted during the pregnancy but again, it wouldn't have made any difference.

@Kateg1983 that’s also positive as my understanding is that it’s low papp-a with high HCG that increases your chances. A higher HCG can just be normal for you! Also good news on the NT stats. The odds are most definitely in your favour but yes when it’s your baby I think it’s natural to feel worried even if it’s more than likely everything will be fine. Hope you’re ok xxx

Just back from the test, I sent off the sample recorded delivery to make sure it gets there. The midwife was lovely and quite positive really. She said the combined test is only 84% accurate anyway. And that my odds are good. I feel like I refuse to believe it really, I don't know if I'm just in denial. But I just think it'll be ok. I will be 37 when baby arrives, and midwife says 37 is the age where the odds really do go up for downs. Maybe I'm also in denial about my age so I think end of next week I should find out, will be a long week.

It's strange how the chances are worked out. So much is taken into consideration it seems and is unique to each person that I think it's hard to compare. I also think that they try to spread the catchment so widely to try to catch as many high risk women as possible. However, some are not picked up because all measurements are 'normal'. It feels like a lottery sometimes!

@Kateg1983 glad the midwife was positive. When I went to do mine in a complete panic she said that age has such a lot to do with it. When your bloods or nuchal are that little further away from 'average' it seems to push the risk up massively. I think you can take comfort that everything looks good on the scan x