Question about risk factors for Edwards/pateaus

[Littlemisssunshine31]

Hi all, I’ve posted here lots of times and I always seem to get some good/informative responses. My midwife says she doesn’t ‘really know’ the ins and outs of how they come to their scores in the 12 week screening tests.

So my story is : 3rd baby. Previous 2 have been healthy DDs thank goodness and I know how lucky I am. Both had ‘low Papp a’ for which I had growth scans & aspirin but was told us was on the cusp both times at 0.4 and 0.39. My screening results for both of them were 1 in 10000 plus for Ds and Edwards/ pateaus.

This time my results are 1 in 600 for Edwards/pateaus and 1 in 700 for ds.
my Papp a is 0.23 which seems v low!
NT was 1.5 so normal range. Nothing abnormal seen on scan.

I appreciate this is still low and I’m probably worrying over nothing but it still seems so much higher than previous pregnancies it’s making me worry! DS risk not so much because of my age (32) 1 in 700 is close to baseline risk, but the edwards/pateaus in much higher than the baseline risk of the general population for my age?
does anyone know what factors could affect this score?
is it just the very low Papp a and the fact I’m 3 years older now? Or has something else been picked up maybe?

Community midwife not helpful but I could speak to hospital I suppose.

Thanks for reading this long one!

Hi OP sorry to hear you are going through a tricky time.

I don't know if this is helpful at all but with my first daughter I had low Papa 0.19 so very low. My NT was 1.8 and I was 34 at the time. My DS was 1/45 but for the other too it was really low risk. I think 1/20 000 or something like that. So i'm assuming something else in your bloods pushed it up?

I opted for the NIPT because of DS chance and I remember my consultant saying that at this stage (I was 13 weeks pregnant) he could be very confident that the baby didn't have Edwards or Pateaus. NIPT came back all low risk. I opted for the NIPT with this current pregnancy too despite lower risks from NHS screening for all 3 and the same consultant told me the same thing but he was reassured baby didn't have the Edwards or Pateaus just from the scan. Would having another detailed scan provide reassurance?

Thank you for your comment @Lonestar1988 . I’m guessing I would need to book something privately? Money is a bit of an issue I’ve looked into the private harmony test but it’s £400 and we can’t afford it. Especially as DH says well we are low risk so don’t worry about it!

I know I really shouldn’t worry . And I’ll try not to. 1 in 600 is still low risk it’s just I wonder why?!

@Littlemisssunshine31 perhaps it was your HCG level? Your husband is right though it's still a very low risk. In a percentage it's only 0.16/ 0.17% chance which is tiny when you look at that way. The 20 week scan should offer more reassurance. The low NT measurement is really reassuring too.

@Lonestar1988 The results are just on my app at the moment and for some reason the hcg isn’t on there… just the Papp a . I guess I’ll have to wait for it to come in the post for that. I’m seeing my midwife in person next week so I’ll ask then.
reassuring that the NT is normal and I checked my scan report and the crown to rump measurement is also bang on the middle centile as well.
Hopefully I’m just being a bit anxious!
thank you I appreciate your statistics and insight 😊

@Littlemisssunshine31 it'll be the Papp-a for sure. They'll prob want you to take aspirin, and do the growth scans again

with a normal NT it would be very unlikely to be edwards/patau's

I'm currently waiting my quad test results and freaking myself out cos it's taking ages to get results back (almost a week now) but I've no idea how long it's meant to take or if I should still be waiting by the phone for bad news 🙈🙈

We missed the cut off for the scan screening due to when NHS scheduled our 12 week scan (13 weeks) then the fact our baby measured 14 weeks on that scan so they couldn’t do it. Next time I’ll be ditching the NHS 12 week screening and paying for the private harmony blood test as it’s way more accurate and doesn’t have false positive issues.

@Sunshine202341 did you have the quad test at 14 weeks?

@Littlemisssunshine31 your screening results look similar to mine (PAPP-A: 0.23 MoM, HCG: 0.65 MoM, NT: 1.5mm).

My results came back around 1:900 for all 3 trisomies (due to low PAPP-A and low(ish) HCG)... I'm a couple of years younger than you so this is in line with the baseline risk for Downs but elevated over 5 times for Patau/Edwards.

I also panicked despite logically knowing the risk is still so low (especially with a normal US), and opted for a private NIPT test. Fortunately, the NIPT test came back low risk for all three trisomies.

We had our 20 week scan yesterday and baby is growing perfectly (currently on the 65th percentile) with no issues flagged. Have growth scans booked from 28 weeks, but so far it seems the low(ish) hormone levels aren't having an effect. Hopefully this will be the same for you :)

No we declined it as read so many people had confusing and stressful results when their baby didn’t have any issues. We just took the hit and paid £400 to have a blood test done privately think it’s the harmony test (NIPT). It’s 99% accurate non invasive and just a super easy blood test. Our baby is 2 weeks old and when we are having another I’ll be bypassing the nhs screening for these syndromes and going straight for the harmony test again as you can get it done as early as 10 weeks pregnant.

@Sunshine202341 thanks! Yeah I'm waiting for quad results and reading about inaccuracy and false positives and freaking out tbh! It's been a week but no one can tell me exactly how long it'll be to get the results back!

Next time I'm just gonna do the NIPT early!!

Mine came back at 1 in 400 risk, very low Papp A (i think 0.2ish) and low HCG 0.8ish. She had. Edwards. In hindsight there were other warning signs. Early bleeding, high symptom pregnancy, dates kept being pushed back because she measured smaller but I knew exact dates so should have been suspicious.

Anomalies were picked up at the 20 week scan and we confirmed the diagnosis by amnio at 23 weeks. We decided to continue with the pregnancy.

However I’ve met lots of other people with 1 in 400/500 whose babies don’t have Edwards. NIPT would be reassuring although not definitive (it’s less good for T18 and 13 than T21) or an early anomaly scan. The vast majority of babies with Edwards are picked up on the 20 week scan because anomalies at that stage tend to be significant (interestingly they tend to improve, especially heart anomalies). Those I know who weren’t picked up almost always had poor scanning at 20 weeks and minor anomalies so a good scan would be a positive result especially if growth is spot on.

Thank you everyone for your comments and I’m finding it reassuring to know that other people also worry! @sandberry I'm very sorry thank you for sharing your story with me.
i have been given a number to speak to the antenatal screening team to discuss but can’t get through to them!
I’m not super worried just wondering. Why/what if etc . We can’t afford private testing husband has said no.
I was thinking today I wish they didn’t give a number! If you are deemed as ‘low’ or ‘high’ risk why do they bother with the numbers it just causes worry I think.

I’ve spoken to the screening team at the hospital and although she was so lovely and tried to put my mind as ease it’s made me feel worse :( she said my hcg was low at 0.6 and Papp a ‘very low’ (her words) at 0.23 .

she said it will go into the Tommys app at my 16 week midwife app to determine ‘risk’ of placenta issues.

she did say regarding the probabilities of an abnormality that in the last few months they have changed the scope of the numbers and the lowest risk you can have is 1/3000. Which made me feel slightly better. Not sure if this is a local thing or nationwide.

I just pray my baby will be ok with these readings. it’s not nice to hear ‘ very low’ from a health professional

@Littlemisssunshine31 just read through this and your recent message, sorry to hear the screening midwife hasn't put you at ease. I too have a Papp-a level of 0.23 and it wasn't described to me as 'very low' just that it's low and below the threshold of 0.4, which anything below that is low. The midwife I spoke to said it isn't even screened for/women informed if it's low at all hospitals in the country.

I highly recommend joining the Facebook support group "Low Papp-a Pregnancy Support Group" - it's been so helpful. literally 9/10 women who post on there have no adverse affect of low papp-a. you can even search your level of 0.23 on the page to see posts regarding this level, if that helps too.

I'm 27 weeks tomorrow, been on aspirin since 14 weeks, baby boy was measuring fine at 20 week scan. I have growth scans at 32, 36 and 40 weeks to check in.