I have been given a 1 in 15 chance of T21

[choccaramel]

Hi just as the title says. Your guys are the first people I've actually told. I have declined all tests. To be honest they put me on the spot and I couldn't really think.
I've had 2 weeks to think about it now and done a bit of research.
My question is I've read that I can ask to be scanned at 16 weeks to check for abnormalities. Is anybody else aware of this?

You will have an anomaly scan at 20 weeks. If any soft markers are present at the scan they will let you know.
I had a postnatal diagnosis of Down syndrome following the birth of my son. We declined all screening for T21 and no soft markers were present at the anomaly scan.

I had a 1 in 30 chance and had a scan to look for soft markers at 16 weeks. I also had the nipt.
Twins are now 3 weeks old and neither have T21.

Robs20 did you ask for the 16 week scan?

Sorry you are going through this. My 1st pregnancy had T13. If you refused all tests, how did you know you have a 1:15 chance of T21? Was that from the 12 week combined test? What other tests were offered? CVS, NIPT, Amnio? Would you go ahead with any test now, or only a 16 week scan?

I agreed to the tests at my 12 week scan, and they phoned the next day and told me. I refused the test where they stick a needle in my tummy, whilst I was on the phone to them. And that was the only test I was offered. They said I could pay privately for another test, I can't remember what it was called now.

It's called the Harmony test. I strongly advise it. It costs around £400 but is non-invasive, very accurate and as a bonus you can find out the sex. It really helped put my mind at ease when I got a high risk result at the 12 week scan.

@choccaramel nope I was offered it. When that/nipt came back as low risk I was then offered cardiac scans (and had 3 at different stages of pregnancy).

OP- its the NIPT they are referring to which is a non-invasive test, where you just provide a blood test from your arm. (Also called Harmony, Nifty, SAFE, but they are brand names). Some hospitals offer it as an alternative to the more invasive CVS, others don't. Many private companies do it, and its costs from £350-£500 depending where in the country you are.

Just because you refused the CVS at the time, doesn't mean its been ruled out altogether. You are allowed to research information and change your mind if you do now want it?

What was the NT at the 12 week scan? Any concerns on that scan? It really depends whether knowing there might be an issue would change anything for you and OH? It could prepare you for the birth of a baby with addition needs, rule out issue and confirm there is nothing wrong at all or opt for TFMR, but really depends on you. ARC are a helpful resource that might help you also:
www.arc-uk.org/

I recently had the call saying it was 1 in 5 chance. I paid to have private harmony test at £450 which came back as low risk. You can also have the amniocentesis done or some people opt for both. I would definitely recommend harmony test if you can afford it and then go from there. Wishing you positive thoughts through it all

Thank you so much for your messages. Have decided to go ahead whatever the outcome, just wanted to prepare ourselves. My older son has said if it turns out that he/she has down syndrome then they are going to train them for the paralympics. So there is always a positive

The Down syndrome association have a lot of good and up to date information as does Positive about Down syndrome. If you have any questions about DS feel free to send me a message x

My risk after 12 week nuchal scan and bloods was 1 in 26. Everything turned out fine and I had the 20 week anomaly scan which was normal. I’m sure they said if there are no abnormalities on the scan you can half the risk.

Annoyingly people with DS don't qualify for the Paralympics!

I also have a child with DS (4year old DD). You can absolutely refuse further tests but still ask for extra scans. You should also get a detailed heart scan if possible - heart conditions are relatively common with DS but they aren't a given, and they aren't a death sentence either.

I'm happy to chat/answer any questions - congrats on your pregnancy!