Down syndrome low risk- not low enough?

[inkworks273]

I'm 32 and 20 weeks. Saw my midwife a couple of days ago and found out that my risk for downs is 1 in 740.

Objectively I know this is low risk but I keep reading about people who get results in the thousands.

It's been worrying me since I found out and I want to do the harmony test but my husband thinks I'm being silly.

What do you think?

i was the same as you mine was 1 in 540. The test that you had is only 80% accurate as well. Have you heard about the harmony test it's 99% accurate and just a blood test. You have to go private though and it's £500. I didn't find out about it until late in my pregnancy and I was.paranoid the whole way through. If I got pregnant again I would have it.

Just to warn you, I tried to do the Harmony test first and they couldn’t get results. So we ended up doing the NT measurements on the NHS and got back a 1/650 result. I think my situation is fairly rare, but the whole thing left me more unsettled rather than reassuring me.

My last dc was 1:35 risk of Downs. cVS showed all was well.

DD1 was 1:6 risk - she was fine. Because she was our first child we decided to just wait and see. We were reassured by the fact there were no obvious issues on the 20 week scan (such as heart or lung issues), but I worried all through the pregnancy.

1 in 740 is still incredibly low risk, less than 0.14%.

I had very similar results to yours and worried myself silly that they weren’t low enough. In the end we paid the money to have the harmony test. I didn’t want to spend my entire pregnancy stressing that there may be something wrong.

I know it's still low risk. I think what throws me is reading about people who got odds like 1 in 10,000 or 1 in 60,000. Compared to that 1 in 740 doesn't seem too good.

It's crazy to me how people can get such vastly different odds.

Don't forget that a big factor in that number is maternal age. The people with the 1:70,000 sort of results are usually twenty-somethings at most; it becomes impossible to get such a big number over a certain age!

The average 30 year old has a 1:800 chance before any tests are actually done, and by the time you're 35 it's 1:270, so your tests have actually showed you're at lower risk than the average 32 year old :)

www.nhs.uk/conditions/downs-syndrome/causes/

I had the harmony in both pregnancies and declined the NHS screening because I knew that this sort of thing (getting a result that was considered low risk but not low enough for me) would cause me to be anxious.

It's a very personal choice but I found the harmony test very reassuring and it was worth the cost to us.

I don't think you're being ridiculous at all, it it reduces your anxiety and it doesn't cause you financial hardship I think it's worth it.

Hello, I had the Harmony as I knew nothing else would stop the anxiety. It was £350 at my hospital. Optional test. I know other places it's more expensive. Results back less than 1 in 10,000. I'll be 36 when my baby arrives. It's hands down the best thing I did but it was nerve wracking waiting for the results too, especially after weeks of worrying already! We did it at 10+3. A weight was lifted though. My husband was supportive of doing the test, if nothing will relax you otherwise maybe have another chat to him as stress not good for you or the baby. Best of luck x

But remember these are still only factors of chance. My daughter was 1 in 1900 when I was 32 (which I think was lower odds than based on my age alone) but she turned out to be that one! She is now a gorgeous cheeky 3 year old who just happens to have Down’s syndrome.

And yes, the NIPTs are much better for accuracy. With my second daughter I got the Iona test done through my NHS hospital for £300 (basically to stop the mws etc talking about amnios, and because I didn’t trust the combined test) and I was given a 1 in 1,000,000 chance for two of the trisomies and a 1 in several thousand for the other.

Thanks everyone. I have my 20 week scan tomorrow so I'll see what happens and how I feel after that.

To posters here who had Harmony tests done, how long did it take for your results to come back? I had mine 2 days ago and anxiously waiting. My clinic also did the blood tests for Nuchal scan and the papp a seems quite low (1.32 iu/l) and I can't really tell if the free beta hcg is low or high - 24.3 iu/l. Google wasn't of much help either. Hoping to get some answers here.

Thanks!

@Nixwix I had the NIPT test done recently took a week to get results. Did they say if they would ring or email you?

I'm 28 and 38 weeks. My risk is 1 in 5. Normal seems to be around 1 in 150 000.

I'd be over the moon with your odds. I have no idea what I'm facing over the next few weeks and this is baby no 3.

I think I'd just be grateful.

@Mayjane5 they did say they'll call, was hoping it wouldn't take 2 weeks as they said. Thanks for your reply!

@Nixwix mine was done through the hospital but still had to post the test to the company, hopefully you will hear sooner than later