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Down syndrome screening advice

Ccopeland profile image
6 Replies

Hi ladies

Has anyone had the Down’s syndrome screen test and got and high risk. What does this mean is it very accurate. Please share good news. I am find this process very scary

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Ccopeland profile image
Ccopeland
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6 Replies

Bless you! I got a high risk result for this pregnancy and went for an amniocentesis. The results came back all clear and everything was fine. What odds were you given? Ours were considered high but still it was only a 2% chance.

Normally you would be contacted by your midwife to talk through in detail and then referred to foetal medicine where I received a counselling session to make sure both me and my partner were ok and we’ll informed before any decisions were made. My amniocentesis was done by a consultant and didn’t hurt at all. I promise! I was petrified beforehand but it was fine. My consultant told me that the odds of miscarriage from amniocentesis have been reviewed by the NHS following a widespread audit and were going to shortly be published as 1 in 400 which is minuscule. You could also look into the harmony test which is non evasive but not as accurate but this should all be explained to you.

It is a really scary time and I totally feel for you but normally when the odds are described to you it doesn’t feel as worrying.

Hope this has put your mind at ease a bit. All the best lovely x

roxannacar profile image
roxannacar

They would normally give you a percentage/risk rather than just high risk. I think anything above 1 in 300 is considered the cut off. So ask ur midwife what the actual risk is and discus your options.

In general you will get offer amniocentesis/or chorionic villous sampling (depending on gestation). This both carry small risks of miscarriage. Some places offer the harmony blood test but many don't. This is risk free but also very accurate). If not offers you can get it done privately if you prefer ... i think it's around £400, which is not cheap. However might be a preferable option.

Hope if all works out for you

Fredaflintstone profile image
Fredaflintstone

Hi we had high nuchal measurement but low risk test.

It was a scary time. I do lots of reading and it seems that most people who had a high risk test went on to find that their babies did not have anything wrong.

Even though our test came back low risk our consultant recommended us to have the nipt test - non invasive screening which I more accurate than the nhs combined test. We wee luck because re having twins an St. George’s was doing a trial for twin pregnancies for free. It came back fine. You could do consider hat if you are worried about the invasive test x

Karinus profile image
Karinus

My screening test came out with high risk as well. We chose to have the amnio done. Not that we wanted to get rid of our baby but to be prepared if we got a Child with down syndrom. Luckily the test showed there werent any chromosome faults but it was a horrible time to go through.

Kempton profile image
Kempton

It's a tough one. We did the tests and we're told we were low risk so that was obviously a relief, though these tests are only so reliable and, like someone above said, I dont think we would have terminated the pregnancy if the results were different.

I know someone who was told her pregnancy was low risk and she now has a child with downs syndrome. They struggled at first but now they say they wouldn't change a thing about their daughter.

Another of my friends (who has 5 children) didn't bother screening at all. All of her little ones have been healthy.

I hope you figure out what's right for you but try not to let it scare you.

Georgina_D profile image
Georgina_D

High risk is greater than 1 in 200 but that also means that 199 in same position will not have downs syndrome. You will be offered amniocentesis to get a definite yes or no answer. You can accept or decline this further test

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