Down syndrome score

MintJulia · 29/12/2021 16:46

It's all relative op. Mine was 1:24 so I had an amniocentesis which showed that my ds was fine.

Talk to your GP for advice.

Soontobe60 · 29/12/2021 16:58

@sunsandwaves

I'm worried my score wasn't good. My sons was 1 in 10000 I've just had my seconds and it's 1 in 4500 is that a bad score?

From this website

patient.info/pregnancy/pregnancy-screening-tests/prenatal-screening-and-diagnosis-of-downs-syndrome

Down's syndrome screening test will give the risk in this pregnancy of the baby being born with Down's syndrome. For example, the test may show that there is a 1 in 1,000 risk of having a baby with Down's syndrome. This means that for every 1,000 pregnant women, one will have a baby born with Down's syndrome and 999 will have a baby born without Down's syndrome. So, this would be quite a low risk.

In the UK, the National Screening Committee has suggested a cut-off level to differentiate between screening test results with a higher risk that the baby is born with Down's syndrome and those with a lower risk.

The cut off is 1 in 150. This means that if your screening test results show a risk of between 1 in 2 to 1 in 150 that the baby has Down's syndrome, this is classified as a higher risk result. If the results show a risk of 1 in 151 or more, this is classified as a lower risk result. The higher the second number gets, the lower the risk becomes (the less likely you are to have a baby with Down's syndrome).

So, when you are given your results, you will be told whether this is a lower risk or a higher risk result.

SherbertLemons · 29/12/2021 16:59

Mine was 1;54. I also had an amniocentesis and all was thankfully fine. It's all about your perception of risk. For me, if I got your "score" I'd have the amneo, just like I did with my higher risk score. For other they will think your score is very low odds. For me, I didn't want odds. I wanted a diagnostic yes/no test.

SummerBluez · 29/12/2021 17:07

@sherbertlemons
You'd have amnio for one in 4500? That's a very low risk score.

SherbertLemons · 29/12/2021 17:09

@SummerBluez yes, I personally would. But that's because my perception of risk/odds may differ to other people, and that's ok.

IwillrunIwillfly · 29/12/2021 17:11

1 in 4500 is counted as low risk. Remember one of the factors calculating your score is age, so it was always going to be a different number than with your first. If you're worried though, get in touch with your midwife and she will be able to talk to you about it.

Pizzaandsushi · 29/12/2021 17:12

As a percentage 1:4500 is 0.02%, seems pretty good to me! It’s obviously considered a lower risk result and personally I’d be happy with that score but like some people have said, it’s all relative and depends on how you view it. Even a 1:10,000 result could result in you being that one person unless you’re willing to go for a more invasive diagnostic test.

Confused521 · 29/12/2021 17:20

I wouldn't have a diagnostic test unless:

My combined score was worse than my age-related risk
Other soft markers had been picked up on a scan

I certainly wouldn't be having an amnio or CVS unless that risk was deemed very high. But that's me.

1 in 4500 is low risk.

SummerBluez · 29/12/2021 21:51

@SherbertLemons seems crazy to me but everyone is different. The risks of the amnio are higher than her down syndrome risk.

Back to the OP I highly doubt an amnio would be offered on the NHS with a 1:4500 score so you would probably need to go private for any diagnostic testing. But I honestly wouldn't give it another thought, it's a very low risk score. Mine was 1:800 and it never worried me.

HopefulRose · 30/12/2021 08:30

I find posts like this so insensitive. @sunsandwaves speak to your doctor if you are concerned. Your comment is disrespectful to parents who have children with downs and is also disrespectful to anyone with a “bad score” less than your own.

Original poster

sunsandwaves · 30/12/2021 08:36

@HopefulRose

I find posts like this so insensitive. *@sunsandwaves* speak to your doctor if you are concerned. Your comment is disrespectful to parents who have children with downs and is also disrespectful to anyone with a “bad score” less than your own.

I find posts like your disrespectful tbh. I said I was worried which is a totally normal feeling. You have no idea my family history or if I have any Down syndrome in my family which may I add I do! And it's a totally normal feeling to be worried regardless of your feelings on having a Down syndrome baby. Also I don't think you can tell me my post is disrespectful as it's my score! If I'm worried about it that's my thoughts. Great you wouldn't be, but I am! If you don't like the post don't comment. How utterly rude

OP posts:

zeena83 · 30/12/2021 10:14

I think it’s perhaps the use of the word “score” that people are finding insensitive…

Also Down’s Syndrome isn’t hereditary, it doesn’t run in families.

Good luck with whatever you decide, OP

zeena83 · 30/12/2021 10:16

Also just to flag that they aren’t “Down’s Syndrome babies”, you may get some backlash on here for that too. Just to give you a heads up in case you get some angry replies

gunnersgold · 30/12/2021 10:20

It's probably changed because you are older and not much else .

RiverRiot · 30/12/2021 11:55

With a score of 1:4500 the chances of having a baby with Down’s Syndrome is vanishingly small.

If you do in fact have someone with Down’s in the family I’d expect you to be more informed about these tests, know how to refer to people with Down’s Syndrome and, frankly, be less afraid of it.

I think the problem with threads like this is that they inherently imply that having a child with Down’s Syndrome is the worst thing in the world (it’s not) and they open the door to ignorant crackpots who think you need invasive tests for ridiculously low risk indicators.

Original poster

sunsandwaves · 30/12/2021 12:48

@RiverRiot

With a score of 1:4500 the chances of having a baby with Down’s Syndrome is vanishingly small.

If you do in fact have someone with Down’s in the family I’d expect you to be more informed about these tests, know how to refer to people with Down’s Syndrome and, frankly, be less afraid of it.

I think the problem with threads like this is that they inherently imply that having a child with Down’s Syndrome is the worst thing in the world (it’s not) and they open the door to ignorant crackpots who think you need invasive tests for ridiculously low risk indicators.

To imply I'm lying about this is far far more disrespectful than anything I have said thank you very much, I have never once said I thought it was hereditary. I simply mentioned this because I was being told I was disrespectful to families when I am in fact one of those families. Honestly the fact I am getting these comments when all I asked about was my score is crazy. Also on the other point of I should I know it's actually changed a lot over years so maybe consider this before accusing people you so not know of lying!

OP posts:

Yebbie · 30/12/2021 12:53

My score came back 1:4000 but I was only 25 so was very concerned as it was higher than I expected. I paid privately for an NIPT blood test which came back negative (1:10000) I paid £500 and it included a scan where we found out the gender and got some 4d pics and videos. Worth it for the peace of mind and none of the risks associated with amnio