Low PAPP-A. Any advice?

[StrawberryHalo]

I had my 12 week scan last Friday where everything looked okay - baby was very active and wriggly which was reassuring to see. However, I had my blood results back earlier this week where it was found that I have a low value of PAPP-A at 0.36 MoM.

My HGC and NT levels were both in the normal range, and I am at low risk for Down’s, Edward’s, and Patau’s.

I am really worried about the low PAPP-A and potential complications/risks associated. The midwife I spoke to on the phone was lovely and said this is relatively common, not a cause for concern and that they just want to monitor me and the baby more closely but I can’t help but feel really anxious about this. I had a miscarriage last year so I am naturally really high alert.

Does anyone here have any experience of low PAPP-A and outcomes? Thank you.

Sorry I’m an idiot, it’s not cod liver it’s just fish oil, you’re right that you definitely can’t take cod’s liver!

They said they used the blood tests and some measurements to get the result, and because baby wasn't in the right position, they couldn't do it.
Aww thank you, she's currently 6 weeks old and having a cuddle :)

So, this probably does not relate to your situation in any way because slightly low PAPP-A (which you have) is very common and results either in an entirely normal pregnancy or minor growth deceleration very late in pregnancy which is closely monitored before it can become an issue.
But I will share my experience here just in case it’s informative to you or others with extremely low PAPP-A.

My combined screening results at the 12 week scan were very, very low (0.13 MoM, which is below 1% percentile). My bhCG was also slightly low (nuchal measurement normal). I was flagged as 1-in-3 risk for Edward’s & Patau (low risk for Down’s) due to the PAPP-A, but 2x NIPT tests came back low risk and amnio came back negative for Edward’s, Patau’s and Down’s.
At my 20 week NHS scan everything looked fine according to the sonographer, and I was told I’d just have a growth scan at 24 weeks; however, I went to a private doctor at the London Pregnancy Clinic for a second opinion 20 week scan. Unfortunately this doctor found that part of my baby’s brain was missing (he told us it’s not an area of the brain sonographers scan for at the NHS 20 week scan because it’s too unreliable for them to detect). Two NHS consultants then checked and found the same results, and then the baby developed extreme growth deceleration over the next couple of weeks and was considered to have severe growth restrictions by 22 weeks.

There’s no clear cut medical evidence that the low PAPP-A was related to his brain development or growth restrictions, but that low level of PAPP-A was considered a lightning strike, and the particular brain anomaly we had was also considered a second unrelated lighting strike, so the doctors we’ve spoken to don’t really have a consensus on whether they’re related or not. We’re still awaiting genetic testing to see if there could have been a known genetic issue that was the cause (I’d previously had a healthy pregnancy and baby with no placenta issues).

I don’t think my story will be relevant to yours in any way because, as I said, my levels were so off the charts low. And I’ve also seen a couple of other women who had levels even lower than mine which resulted in a completely healthy pregnancy and baby. But what I would say to anyone now with any kind of pink or red flag in pregnancy, is if your 20 week scan is being performed by a sonographer rather than a doctor in the fetal medicine team, if you can afford a private scan with a proper specialist then it’s absolutely worth it for peace of mind x

Thank you so much for taking the time to share your story, and I’m sorry for what sounds like an incredibly scary and stressful time for you. How are you doing now?

If you don’t mind my asking, was there anything that prompted you to go for the private scan after your NHS one was reported as being fine?

I hope that the genetic testing is able to give you some answers xx

I had low PAPP-A with my first pregnancy - similar levels to yours I think. I was told that under 0.4 is considered low and I was 0.38. I had extra growth scans at 28, 32 and 36 weeks. By 36 weeks I was feeling pretty relaxed about it but the technician took measurements, ummed and ahhed and called in a colleague for a second opinion, then sent me across town (from Hounslow to Acton) to a specialist for another scan. The upshot was the growth was slowing, and again was pretty borderline, but they decided it would be safer to induce. He was just under 5lb and spent a bit of time in SCBU and had a bit of jaundice, but was otherwise fine. I was pretty anxious but all the health professionals were clearly unconcerned - seemed to be a pretty common issue and whilst they erred on the side of caution thoughout, it never felt like there was any serious danger.

He's nearly 15 now, taller than me and doing his GCSEs. His sister is 12, and I had additional scans throughout that pregnancy as well, but all was well and she was born full term at over 7lb. So just one of those chance things I guess.

I hope that's reassuring. I'm sure there's been improvements in care in the last 15 years as well, to make it even safer. I remember well how anxious I was but we were well looked after.

I had a value of 0.22 and my daughter was over 8 lbs at 40 weeks. No complications. They prescribed me aspirin because of it though so was on that from 14 weeks or so. Hopefully that’s reassuring.

So because of our very high risk result for Edward’s/Patau’s we were offered an amnio on the NHS (NHS amnio at this point would only have tested for these two and Down’s). But because we had low risk results on the NIPTs, we were told that the chances of miscarriage from an amnio was actually higher than the chances of a false negative on the NIPT. And were also told that Edward’s/Patau’s show up very visibly on scans by 20 weeks. So we decided against the amnio and to just go on the basis of scans, but for this reason I wanted a very experienced doctor doing my 20 week scan rather than a standard sonographer (we went with Dr Fred Ushakov at the London Pregnancy Clinic). The NHS scan was on the Weds and the private scan was next day on the Thurs, so the issue was there at the NHS scan it’s just that it wasn’t picked up at this stage (although likely would have been later in pregnancy).

Very sadly, our baby showed very significant issues with the combined brain and growth findings, and likely would have suffered greatly in life (if he’d made it past birth and out of the NICU, which was also not a likely scenario), so we made the impossible decision to end the pregnancy. Once we’d decided this we then had an amnio to try and see if we could get any answers that could tell us what happened or if it would likely happen again, and it was at this stage the amnio ruled out the three major trisomies, although other genetic testing is still ongoing.

I had this with my second. Took aspirin as advised, and had additional scans booked in and then a consultant appointment. I actually ended up having fortnightly growth scans from about 26 weeks as was measuring small. The placenta looked fine on the scans so they let me go to 39 weeks, when I was induced due to concerns about her growth. She was born 6lb4 and absolutely fine. They were concerned on the scans that her abdomen was small relative to the rest of her, but think she was just lying in a weird position as was fully in proportion when born!

She was something like 4th percentile when born and soon soared to 75 so I do wonder if there was some affect on her growth, but they kept a close eye on me and she is now a massive preschooler so no long term issues!

I am so sorry for your loss. Sending you healing thoughts and so much love.

It wasn't communicated to us. What I will add though, in case you have any more babies in future is that I was also monitored more through that pregnancy as well and was given Aspirin to take daily. Had no Papp-A issues second time around.