To be worried about screening results even though low risk?

[Rose559]

I got my results for my combined screening on Friday which came back with 1 in 1188 and low risk. I initially didn’t think much of it and just read the lower risk bit and disregarded the letter but then others started talking about their results in the December babies group and I started to compare.

Others are getting results of 1 in 45000, 1 in 15000 etc and the next closest to mine is 1 in 4000. Being a serial Googler I have spent the weekend reading and reading about it and worrying myself silly. I know everyone is different and I shouldn’t compare (easier said then done) but feels like it should be much lower for my age?

I will phone first thing tomorrow so see if they have a reason my risk is higher than it “should be” but what questions should I be asking?

I’m 27 and this is my first baby.

Thank you everyone. Appreciate this is a sensitive subject 💜

Stop worrying yourself and stop googling! Statistically you have a 99.916% chance of having a baby without the trisomy the test is screening for. Unfortunately there is no way of eliminating all risk from anything we do BUT personally I think you can be pretty reassured that you don't need to worry yourself about the result of the screening.

What was your NT result? Was there anything said at the scan?

That's still a very low risk result and, honestly, not something you need to be stressing or worrying about. I know it's hard but try not to Google or compare yourself to others as it's a personalised result based on all the elements combined. You will just make yourself sick with worry.
If there was a specific issue with your bloods or something like that, then they would tell you about it.

There is no such thing as 100% in these things. I've seen people on here with more than 1 in 10 risk go on to have healthy babies and others with 1 in 10000 who give birth to a baby with DS. The only way to get more reassurance, is to pay privately for a NIPT test.

@sel223 I haven’t been given NT or blood results, just my risk so I’m going to call tomorrow to get some more information. I think I’ve just worried myself as I would have expected a much lower result for my age so wondering if they’ve found anything “abnormal” with my bloods/measurements which caused the lower number.

Thanks @onlyreadingneverposting8. I also worked out my percentage risk and know I’m being silly but think I’m worrying that something else could be wrong. We’ve had 4 still births in the family (over 2 generations) so I’m worrying about every little thing that doesn’t come back “normal”.

@Rose559 they normally just tell you the NT results as they're doing the scan, or write them on notes. I didn't get blood test results either.
If there was anything abnormal in your blood they would have told you and you'd be high risk which is over 1 in 250 or something like that. You're way off that.

They didn’t tell me at the time and I’ve checked my notes and nothing on there other than the CRL measurement. Hopefully they can tell me tomorrow. Wondering why they didn’t write it on notes as seems they do for most people? It’s actually 1 in 150 in my region so even further off but it’s so difficult not to compare.

My first at 24 the risk was 1:1100 hes absoultly fine.

As everyone has said OP it sounds like a very good, low risk. However I completely get your anxiety especially with a tragic family history so you should call up and be reassured. I know it's all different with COVID but I was anxious in pregnancy and my midwife was so patient and lovely because ultimately the anxiety isn't great for stress levels so she wanted me to be as informed and calm as possible.

I'm fairly certain she even wrote it in my notes that I needed a hand hold. They're so good and whilst the hospital midwives or scanning team may not have as much time my community midwife at the doctor was always on hand to talk everything through with me.
x

I wouldn’t give a risk result like that a second thought, honestly :) Assume that’s for downs and not Edwards/Pateus?

Agree it might be worth calling to find out your nuchal fold measurement but am surprised that they didn’t note it at your scan.

A chat with your midwife might really help.

@foreverbaffled I know neither did I until I saw others’ results. Yes down, the other two were 1 in 111942. I think it’s strange that they didn’t note it either, which makes me think the worst. I’m going to call tomorrow and hope they can tell me. I emailed my midwife Friday and she’s back at work tomorrow so hoping to hear from her then.

Thanks @zaffa. I’m bound to worry about anything with the history, there have also been very premature babies so every result I get that doesn’t seem “normal” I worry about. But understand there really is no “normal” when it comes to pregnancy. I know I need to wait until tomorrow when I can speak to someone about the results but after worrying myself all weekend I knew you lot would be able to put my mind at ease a little bit.

Try not to worry, it's just a statistical thing, it doesn't mean anything abnormal. They take 2 or 3 markers from your blood plus the nuchal fold measurement, and statistically with your inputs, 1 out 1,188 would have DS (assuming that's what the test is for), 1,187 would not have it. It is more likely than others results because of one level or another, but still extremely unlikely - and nothing is abnormal.

25, first baby. Mine was 1 in 30 due to low PAPP-A, not overweight or any other risk factors so we were well suprised. I think sonographer probably just measured the fluid wrong, we had a CVS and all was fine, but we weren't overly worried even with 1 in 30 and still like 97% chance baby was fine. Try not to worry, the only way to know for sure would be a CVS or a amnio, both of which have miscarriage rates way, way higher than your risk of any issues.
Could check out a harmony test though if your still worried?

I was quite anxious in my pregnancies and so I had the harmony test both times. You do need to bear in mind the risk of them not being able to get enough DNA to do the test but if you get a low risk result it is very accurate for Down’s syndrome.

I'm 25 and my downs result was 1 in 180 so I get the thinking it "should" be much lower for your age, his n.t was 2.7 which is the upper end of normal hence the risk scote. There were absolutely no markers for anything at all at the 20 week scan so I ve not concerns whatsover.

My results were 1:1200 and I'm 25. Baby's NT was 1.2 which is fab and he's doing fantastic at just over 20 weeks.

I do however have low papp-a which lowered my results a bit. However, that's not a bad result at all! That screening test combines all sorts of things that's why it's not very accurate compared to the other tests

Have you thought of doing the NIPT test (also called Harmony), because apparently that is more accurate. It's not available on the NHS but if it stops you worrying, it would be money well spent.

I haven't done it but my sister has because she wanted more certainty and felt the usual test wasn't reassuring enough (for her).

Thanks all. I think I’ll feel a little more comfortable tomorrow if they can give me my blood results and NT measurements as at the moment don’t know any of that.

I am 1:33

You are low risk. You are most likely carrying a perfectly healthy baby

Pay for a private harmony test
We just paid for iona, harmony wasn't offered via hospital. Iona was £350 and both are more accurate for screening
It should put your mind at rest

Take great comfort in such low figures, pay for a private screening if concerned and try to enjoy your pregnancy

Congratulations

@Rose559 mine was low risk at 1:292. So you're fine.

My NT was middle of the range, no idea about the other tests because I never got a letter (26 weeks now).

@lumpydaisy are you in Scotland. I didn't get my letter either. I phoned in after 4 weeks of hearing nothing and I am over 40 so was freaking out. I would like to know the other measurements but the midwife said they normally get a letter and just throw it away if the result is low 🙄🙄

I’m spoken to the hospital today and they told me my NT measurement was “normal” at 2.3mm and my PAPPA and HCG were both “normal” but didn’t give me the results of these. Spoke some sense into me that I shouldn’t compare (which I knew I shouldn’t be anyway) but still wonder why it was higher at 27, teetotal, middle of a normal BMI etc, don’t think I’ll ever stop worrying until the baby is about 30 though....

That all sounds really reassuring @Rose559. I’m sure you will feel a bit better after your 20 week scan which will likely show everything is fine. Your NT measurement might be at the higher end of average or something (I don’t know!) which skewed the algorithm a bit but it’s all normal so that’s encouraging :)

@foreverbaffled thank you. Yes that’s what they said that the measurement would have been what put the risk higher as bloods were all normal and NT was the higher end of normal. Not sure whether to go for the NIPT to put my mind at ease but I do know I’m worrying unnecessarily!

I understand why you’re considering NIPT but that’s because I’m prone to anxiety took and I know how hard it can be to rationalise your thoughts. I don’t think your results warrant one but it’s very easy for me to say that! I always had a cut off of 1/1000 in my head and anything riskier than that and I would have considered the NIPT.

If the private blood test is financially viable then maybe it wouldn’t hurt to give you peace of mind? Or maybe see how you’re feeling in a week or so as you might be a lot less worried.