NHS test- how accurate is it really?

[Chattycat78]

Posting on behalf of a close friend who has just been given supposed odds of 1/2 chance of downs in the NHS testing. This is based on age (39), slightly high nuchal and higher hcg/lower PAP A than expected. However, I'm not convinced.

Isn't it totally possible (or likely in fact?) that this has just come about due to a combination of unlucky factors, appearing to point to something, when in fact, it's all fine and the NHS test is just a bit crap?

She's now waiting for harmony results, so am keeping my fingers ridiculously crossed that my theory will pan out.

What do people think?

www.arc-uk.org/

The harmony test isn't diagnostic. She will still probably having an amniocentesis or cvs. All you can do is hand hold and make it 100% clear you will support her whatever decision she makes.

I know its not the same but when I got a 1:7 risk from the nhs combined test I only told the essential people (not even my mum) as I didn't want anybody's advice about what to do. My manager started talking to me about life expectancy/quality of life etc and some documentary she'd seen about downs syndrome and how lovely the downs children were. It was the last thing I needed as it's such a big and personal decision.

Agree with making sure she has a cvs or amnio to make sure if she is considering terminating . As I said it can't pick up all genetic conditions but she should definitely have one if she is considering terminating in my opinion .

If she's going to have the CVS or amnio I think the best thing you can do is support her. Regardless of the result she might be scared of the test itself and she'll need to rest for a couple of days afterwards so having someone to talk to will be helpful or she might feel like some escapism in watching a film.

I have just gone through this myself and have come to the conclusion that if you are late 30's or early 40's (I am 43), the free combined test on the NHS is a total waste of time. I was scored high risk 1:18 on it but after asking a tonne of questions, I discovered that I was high risk before I even had a scan or blood test - 1:48 purely on age! My risk was increased because one of the 2 hormones they measure was elevated. The hormone and NT were normal. I did my own research and rejected CVS and Amnio and went with NIPT which has no harmful effect on the baby. It's not free in most NHS hospitals sadly but well worth doing. There are 3 or 4 different makers of the same type of test all with roughly a 99% accuracy for detecting downs. I went with Verifi offered at Queen Charlottes and Chelsea (£400). I had 10 days of stress waiting, but boy am I glad I did - I have a low risk baby. I cried so many tears over the stress of this - if I can save any mums to be the same - my advice is go straight to NIPT if you are over 38. I believe St Thomas and one other in London offer this testing on the NHS and from 2018 most will.

The baby has Down's?

Listen. Research. Support.
And take your lead from her. When I was in that position, the absolute last thing I needed was people's opinions on what I should do. Head shaking and judgement aren't useful and she's going to get a lot of that no matter what she decides to do.
From a purely personal point of view, it's not bad news at all. It's scary, yes. Unknown. Shocking, and most definitely not what you want. But it's doable. Totally. Just a slightly different path that's all. My child is an absolute gift, as is every one of the many kids with DS I've come across. If I can be of any help, I will. Feel free to pm me. I won't judge and I can answer any questions she might have.

Thanks all. Just to update the thread- Amnio confirmed it. She had a termination this week. Good luck to everyone going through similar.

I'm sorry to hear that, it must have been so difficult for her to make the decision and go through with the termination even if it's the best thing for her. I hope she gets the support she needs.

Thanks.