Genuinely concerned about Down Syndrome risk result! (Title edited by MNHQ)

[sweetmotherog]

Mine has come back as 1 in 1000.

This seems quite high considering other factors. I know someone much older than me who's risk is 1 in 1600...

Yes I know there are women who receive a result of 1 in 150 or even 1 in 80 but those people would have other risk factors too I thought.

Why has my result come back so high I wonder?

The title should say concerned! Very concerned.

Did you mean to say “contented”in your title?

A risk of 1/1000 is still 999/1000 of not having Down’s Syndrome.

Is it helpful to think of it as 0.1% instead? That's is extremely low.

99.9% chance of having a baby without Downs.

Bike No I didn't! Cross posted.

And I know it's a risk of 1 in 1000 but that doesn't seem anywhere near as good as 1 in 1600 so I'm wondering why my result isn't better considering the measuring of the fetal fluid at the back of the head was normal apparently

So why is my risk higher? I suppose I'll have to quiz my midwife

If you are concerned ask for further testing, I would recommend heart tests because with downs they are the factor that can cause problems. Like so many things, it's not a homogeneous condition, some kids are like my friend, now living at college independently, others require care for life

Your age can significantly increase the risk. Mine was 1 in 350 as I was an 'geriatric mother' (I was 36)

Sorry posted too soon. Had a normal pregnancy and birth and now have a very boisterous two year old.

frogs Yes that's what I thought! But the woman I know who got 1600 was in her 30's.

I'm only early twenties

Hopefully your midwife will be able to shed more light on it, definitely ask her.

That’s not high, but you can get further testing privately (ie the harmony test) if you want to check

If you had the quadruple test I bet it’s your hormone levels that reduced it from a lower risk of ie 1 in 1600. But it’s still nothing to worry about

OP you need to pay for the harmony test. It’s about £500. In your situation I wouldn’t bother but it will give you a yes or no (I had one, my risk was 1 in 70)

As I always say on these threads, I had a friend whose result was 1:2500, maybe higher. Her baby was born with Down Syndrome.

If you want to know for certain you need more testing.

If you need to know for sure get the harmony test.
Remember it wont pick up every single syndrome. But it can certainly tell you yes or no for the main trisomies. (Other syndromes are available....)

Agree with pp that it could be your hormone levels. I had low Papp-a that completely skewed my result - when I paid for harmony my risk came
Back very low and she talked through how just one low hormone level can make the nhs test come out higher risk.
If you’re concerned the only thing you can do is pay for something like the harmony, in my experience the midwives weren’t overly helpful as they didn’t have the breakdown of the test and just saw my result as low risk even though to me it didn’t feel low enough.

OP, was it the quad test? If so markers in your blood also affect your individual
results, which are low as a PP has pointed out. However only a diagnostic test will give you more clarity and as your screening result is a low chance this won't be NHS funded. There will be a screening midwife associated with your NHS Trust. Maybe have a chat with her or your community midwife to discuss.

I had 1:3. I had amniocentesis and chromosomes were ok.

Had a normal pregnancy and birth and now have a very boisterous two year old
You know you could write that sentence about a kid with Down's syndrome too, don't you?

Pay privately for the Harmony rest if you're genuinely concerned. It'll give you a definitive yes or no answer.

Thanks all, I'm very interested to know why the risk wasn't less since I'm so young and have no risk factors, including a normal result from the actual scan.

It was a 12 week scan (done at 13+5), combined with a blood test. That was it

It’s the bloods then. You can see from the scan whether it was the neck measurement but with those odds it won’t be.

The blood measurements are all supposed to be 1. I had a friend whose risk was 1:147 due to the pappa A hormone being 1.1. She was much older than you but i imagine a similar marginal result has pushed your risk up slightly.

Nearly 30 years ago I had 1:160. I was 25. Amniocentesis was fine. Consultant I saw said sometimes the lab made mistakes as a possible explanation.

If you need to know for sure you'd be better to have further tests.

I had high HCG and apparently that's why my test came back as 1:2200 instead of the 1:10,000 my sister got

I have anxiety so I had the Harmony test done privately, cost £500 but gave me peace of mind. I also found out he was a boy at 14 weeks through it

I had 1:330 and my baby had downs. You need to pay for the harmony to be sure, I would with any future pregnancy.

Age isnt the only factor here, that just determines the baseline. Although Doens is more likely in older mothers, that doesn't necessarily mean that an older mum will automatically have a higher risk factor than a younger one.
They look at nuchal fold thickness and fragments of DNA in the blood. It's probably the blood test which is causing the higher risk.