Low PAPP-A / Down syndrome chances

LOB1993 · 2024-09-03T09:11:36+00:00

Hello, Firstly I want to start off by saying I know this is a sensitive subject but I am just looking to get some more information and advice. We got our letter to say our probability of Down syndrome was 1/390. The NHS refers to it as low risk but I have seen other threads that say some trusts describe this as an intermediate risk. I have 4 other friends who are all pregnant at the moment and their risk was <1/5000. I know you shouldn’t compare but I just wanted to know if anyone thought it was worth me getting the harmony test? It is very expensive and my husband has reminded me that our risk is actually less than 0.5%, I think it was just a shock seeing a lower number. The reason our number was lower was because my PAPP-A levels were 0.35. Again, this was quite a worrying phone call to get and just wanted advice on whether this is something I should actively be worrying about. Thank you

ab03 · 03/09/2024 12:55

Hi, sorry you are having this worry. I know exactly how you feel as I got a chance of 1 in 207, and next to the t13/t18 chance of 1 in 41,000 on the same letter, and the much lower chances given in my previous pregnancy, I found it hard to believe this was a low risk.

My result was also down to slightly low PappA and slightly high hcg. My husband was similarly unconcerned but I couldn't stop worrying and constantly researching downs syndrome chances/experiences so I did get the NIPT and was relieved that the test showed very low risk.

Your chance is quite a lot lower than mine, and part of my concern was why this pregnancy was different from my last one only two years ago, but if you are really worried then the NIPT is worth doing (unless spending the money would cause you more stress than this currently does). Part of me feels I shouldn't have done the test because I didn't need to be worried but on the other hand I am glad I won't have to keep wondering all the way through pregnancy and birth until the baby is checked when they're born. Maybe see how you feel in a week or so, if you are still worrying then the test might be worth it for you. Also consider how you will feel after the test if it comes back low risk - will you regret having paid for the test? Might also be worth considering that if the baby has a case of down syndrome with more serious health implications (eg heart defects) then it is likely to be picked up at the 20 week scan.

Hope everything goes well for you.

Original poster

LOB1993 · 03/09/2024 15:14

ab03 · 03/09/2024 12:55

Hi, sorry you are having this worry. I know exactly how you feel as I got a chance of 1 in 207, and next to the t13/t18 chance of 1 in 41,000 on the same letter, and the much lower chances given in my previous pregnancy, I found it hard to believe this was a low risk.

My result was also down to slightly low PappA and slightly high hcg. My husband was similarly unconcerned but I couldn't stop worrying and constantly researching downs syndrome chances/experiences so I did get the NIPT and was relieved that the test showed very low risk.

Your chance is quite a lot lower than mine, and part of my concern was why this pregnancy was different from my last one only two years ago, but if you are really worried then the NIPT is worth doing (unless spending the money would cause you more stress than this currently does). Part of me feels I shouldn't have done the test because I didn't need to be worried but on the other hand I am glad I won't have to keep wondering all the way through pregnancy and birth until the baby is checked when they're born. Maybe see how you feel in a week or so, if you are still worrying then the test might be worth it for you. Also consider how you will feel after the test if it comes back low risk - will you regret having paid for the test? Might also be worth considering that if the baby has a case of down syndrome with more serious health implications (eg heart defects) then it is likely to be picked up at the 20 week scan.

Hope everything goes well for you.

Thank you so much for your reply. It’s just nice to know that other people felt the same as me in terms of the worry. I am glad you got the test and the reassurance you needed.

I think I am going to sit on it for a week like you said and if I am still actively worried just get the test. Like you said, it is expensive but if it gives me peace of mind then it is worth it.

In the 20 week scan will they be able to tell more? This is my first pregnancy so it’s all new to me.

Thank you

OP posts:

ab03 · 03/09/2024 16:47

I phoned the screening midwives about it all initially and they said that at the 20 week scan there are no specific tests for downs syndrome but they check all the organs etc generally which sometimes leads to more tests which might then diagnose downs syndrome. As there are sometimes related issues with organs, some cases would be picked up at that point. That didn't give me enough reassurance personally but for some people it might be enough!