High risk Downs results

[Ginny1234]

Hi, I just got my results back and have a 1:25 risk of Downs. I'm 41 and so, at EDD, my risk of Downs would be 1:60 just based on my age but the algorithm has given me a lower result even though, as far as I can tell from what I've read, my NT, pappA and HCG levels are in the normal range.
I know the stats are skewed for older mums because the algorithm works on the stats for the whole population and older mums are a small % of that group. Also, the results are just risk indicators and have a 10-15% false positive rate.
I was just wanting to hear from anyone with high risk results and anything you think might be helpful for us to hear. I'd particularly like any links to evidence about accuracy of these results in older mums and % of over 40 births with Down's syndrome.
Thank you xx

Hi @Ginny1234, do you have a follow up booked with your screening midwife / consultant? They will go through the results with you and talk you through any potential follow up tests - that would be the most helpful thing I can suggest. It is awful worrying time so you have my sympathies.

In any case, the results are just a probability as you say, they are not an absolute measure by any means. That is why follow up invasive tests are offered to high risk pregnancies to give a definite answer one way or another.

Our high risk result in a previous pregnancy was much worse than that and after CVS it wasn’t good news but current pregnancy, and at same age as you, came back 1:10000.

You may also want to look in ‘Antenatal tests’ section on here.

Thank you for that @Tini17 I hadn't realised there was an amneo thread so I'll have a look on there.
I know about the further tests, I think I'm just wanting as many facts as there are but I'm finding people are trying to be nice and sweetening it up for me. My husband and I had already spoken before the test about how Downs would be ok and we would carry on but it's still come as a shock I guess. I think I just want to know what's happening so I can be ready. It's a confusing time really.

If you don’t want an amnio but would like more accurate screening, consider having an NIPT (Harmony, Iona etc.). Your NHS trust might subsidise this as your results can have come out high chance.

Also, have a look at the new parents section of the Down’s Syndrome Association website - their expectant/new parents pack is really great. Positive About Down’s Syndrome has some great articles written by parents covering a range of experiences.

I can appreciate your shock about learning that things may turn out slightly differently to what you expected. My DD will be 4 next week. We learnt post-natally that she has Down’s syndrome. She is absolutely brilliant- can walk, knows loads of signs and words, is obsessed with Hey Duggee, does a bit of counting too, and is a wonderful big sister to my other little girl.

Good luck with the rest of your pregnancy and beyond!

Here are my girls!

@curliegirlie such beautiful, happy children, you're very lucky. Thank you for your post - I think in my search for facts I've got quite skewed and negative views of Down's syndrome which has made me worry more. I think maybe the reassurance I need is In my feeling that a baby with Down's syndrome will be ok. I've not looked at that information on the Downs website so I'll look tonight with my husband.

Thanks for your replies xx

Update:

So we got the results today and it's all low risk.

From 1:25 NHS Triple test to NIPT results of...

Trisomy 21: Low risk probability 1 in 1088771
Trisomy 18: Low risk probability 1 in 159315
Trisomy 13: Low risk probability 1 in 48420705

Quite a difference so I'm glad we went for the testing.

We also found out we're having a little baby boy 😊

Congratulations op 🙂

Lovely news. Those tests are always skewed. I was told I had a 1:4 risk of DS with my last DC and he does not have DS. I did have an invasive test. I was in my 40 s too and new I would be high risk based on age alone