Low PAPP-A: did anyone go on to have problems?

[Moancup]

My blood tests have shown I have low PAPP-A. It’s 0.2 something so really is quite low. I’ve started on 150mg of aspirin at 14 weeks and my trust has already booked me an extra 28 week scan and I’ll also be scanned at 32 and 36 weeks.

Obviously it can be quite scary if you Google it, especially as one of the first results is a Tommy’s case study of a woman who went on to have a MMC at her 20 week scan. But it also seems like it’s a new and under researched area and lots of people have low PAPP-A without ever developing pre-eclampsia or or having growth problems.

My normal approach to risks in pregnancy is concluding that they’re massively overblown! Although obviously I’m taking the aspirin and accepting the extra scans. My practical fear is being chucked out of the midwife led unit or rushed for induction. I need to discuss my trust’s policy with the midwife, and I hope that by that point decisions are based on how the baby is actually doing at the scans.

I’m very interested in people’s experiences of whether it did end up being a complication?

@DCLon86 @Moancup I don't know if you guys want to maybe chat more about iugr? I'm 31+6

@theotherfossilsister - So sorry that you're going through this too, thank you for sharing your experience with what happens next. I'd really appreciate chatting more about iugr, still trying to get my head around what's going on and what comes next, and it's been helpful to hear that others are going through similar (not that I'd wish it on anyone!). I'll know more about my own situation after my scan and consultant appt tomorrow.

Rookie question but I'm quite new to Mumsnet, not sure if the etiquette is to move this to DMs or keep chatting in here?! Happy either way.

@DCLon86 maybe we could change to pm or WhatsApp and add @Moancup too if you like @Moancup ? It's stressful but good to know people of the same gestation going through the same xx

@Moancup sorry to read of your update. I had a similar situation with my DD - i had issues with cord flow at 12w scan, put on asprin, regular growth scans but DD dropped down and down the growth charts at each scan. At 36w scan (which had to be at 37w due to covid isolating), she was below 9th centile and they wanted her out ASAP. Induction was booked for the next week and i was told to stop the asprin. 48hrs after stopping the asprin, my BP went through the roof, waters broke and she arrived a very swift less than 24hrs later but a tiny 5lbs 12oz.

I wanted to have a Birth Centre / midwife led birth but even without the induction, they wanted me on CTG monitoring. As it was, this picked up very quickly that DD was getting in distress (babies that are SGA find labour more difficult to cope with) and at that point we basically got her out in 2 pushes. So whilst i was initially disappointed, in hindsight, it was certainly for the best. I had full midwife support on the labour suite and was allowed to birth on the floor, in the position I wanted to, with no pressure for anything except the monitoring and a catheter as i couldnt empty my bladder. So not as terrible an experience as i had imagined in advance.

I would definitely recommend seeing if you can get info about the neonatal unit. My DD actually picked up an infection which turned into sepsis (unrelated to the BP issues in my pregnancy) and we spent two weeks on NICU / SCBU where there were lots of prem babies. It was the bit i felt the least prepared for. Things that i wish i had prepared for:

• footless babygros as the babies have to wear monitors attached to their feet so none of our babygros were appropriate
• a book to read to her on a night
• comfy clothes for me for an extended hospital stay that wasn't a nightie
• hand cream
• sheer emotion of it all (although nothing can prepare you for that - especially on top of post partum hormones!)

The other thing to prepare for is that SGA babies are very very sleepy due to being so tiny. Which means they dont feed well. Which means they sleep more. It ends up become a cycle. DD dropped to below 0.4th centile at one point. So you have to be really conscious about waking baby up to feed every 2hrs. I ended up combi feeding as after the trauma of the sepsis, my supply was rubbish and i couldn't get her weight up. But that isn't the case for everyone.

She is now a (usually) gorgeous, cheeky 1yr old and is hitting 25th centile for weight so doing great - although has just projectile vommed all over me after have her 1yr jabs earlier today 😕 So it isn't an indicator that they will always be tiny.

Hope all goes well and the little one puts on a final push of growth! 🤞🏻🤞🏻🤞🏻

Gosh, sorry for the length of that one^ 😅

I had low papp-a with my now 2 year old. I think it was 0.34. His growth measurements were fine all the way through pregnancy but was a little small when born - 6lb1. Otherwise perfectly healthy. Try not to worry.

Happy to move to DM @theotherfossilsister

@GuidingSpirit thank you, that’s a really helpful post - I had been wondering why prem clothes don’t have feet! I’m sorry you went through the stress. Do you mind if I ask if you managed to establish breast feeding enough to combi feed for the long haul?

@Moancup yes, we did. So i breastfed every feed first and then gave a formula top up after each one. Tiny amounts to start with (40ml) and then tried to keep to the min amount of formula needed to support her weight gain, so that she got most of her nutrition from the breastmilk. Managed to keep that going for 6months. At 6 months i started winding down slowly until at 9 months, she was just having one bf per day, when we stopped. I could have kept going I think - i hadnt experienced a drop in my (meager) supply. But we were under the infant feeding team and i also pumped 6-8 times a day until 12 weeks old and then 2-4 times a day until 6months on a hospital grade pump to keep my supply up. So by 9 months, i really felt like my mental health was starting to suffer and it felt like the right time to switch to formula.

@Moancup @theotherfossilsister - happy to move to DM/Whatsapp!

Feeling a bit better after consultant appointment this morning - she thinks baby is just small, it's likely the result of the low Papp-A. They can't rule out all genetic/chromosomal issues without amnio (tricky at this stage) but she said it's very unlikely to be something like that. Everything else looks normal, placenta is functioning reasonably well (consultant said she's "seen worse" 😬). So now just going to be monitored very closely and they'll try and get me to 37 weeks...

I’m glad you found it helpful. What kind of monitoring are you having now?

I’ve been told it’ll be between 34-37 weeks, depending on what fortnightly scans and monitoring in between shows. My consultant seemed pretty down on things holding steady and warned me that if the placenta is struggling now it only gets worse as the baby gets bigger.

She’s also very anti trying for a vaginal delivery if it’s before 37 weeks. I wasn’t expecting her to be so firm on that from what I’ve read online, as it seems plenty of other trusts will try induction.

Hello, just tried to send pm but I can't for some reason @Moancup @DCLon86

37 weeks is fantastic @DCLon86 ! I'm hoping to get to 34 although anything after that is a bonus. Is it too late for a NIPT for chromosomal things? We had one at thirteen weeks when our screening threw up a high chance. It came back with no known anomalies though dp has since read that low PAPP-A is a marker for autism which can't be picked up by a test. I'm autistic myself so think this is highly likely the case. I was also a tiny baby in the days before regular scans etc. I worry about my child being autistic but I guess it's something we can deal with.

We have consultant this morning but I think we have to wait until fetal medicine on Wednesday to really know more. We might get a provisional date though, like if everything is ok you can go to first August or something.

How did the consultants go @theotherfossilsister?

I’ve started collecting colostrum. Had my first attempt yesterday and managed to get a syringe full. Psychologically I’m finding it quite helpful to know I can put some nutrition aside for him now.

Are you two telling people? I’ve told a few key people at work that I’ll be disappearing early but date tbc but I’m not comfortable with the idea that too many people are waiting for a weekly update of whether I’m about to deliver.

@Moancup that's really amazing. How do you collect it please? I literally have no idea what I'm doing.

Consultant said c section wc 25/7 which is 36 weeks but might go earlier or potentially later depending on fetal medicine. Seeing them Wednesday and 3xctgs a week

My consultants are also against trying vaginal. I'm just resigned to c section now.

There are lots of good videos on YouTube on hand expressing colostrum. I suggest you watch the ones using real breasts - I didn’t find the knitted boobs that helpful, and it’s helpful to see for reassurance quite how tiny an amount of colostrum you produce. I watched a really good one with a narrator with a French accent but I can’t find it now unfortunately.

You can buy colostrum collection syringes on Amazon. You do need a syringe I think as you do need to syringe the sticky little drops off your nipple. It took me three rounds on each boob to fill a 1ml syringe!

From what I’ve read there’s no guarantee that you’ll get much and the important thing to remember is that it’s not an indication of how breastfeeding will go. I was planning to do it anyway as it’s helpful if the baby has jaundice etc so I’d already discussed it with my midwife. She emphasised that there’s no need to go mad and fill loads and loads of syringes as the key is building up supply after birth anyway.

Thank you @Moancup . I'm scared of starting labour early ??

Fetal medicine tomorrow and really scared. I feel horribly agitated as know that if they're not happy with the blood flow he's coming out super early.

Sorry for slow replies!

They haven’t talked to me about induction vs C section yet, I’ll raise that with them at my next scan, I don’t mind what they need to do really, whatever is best for baby but it sounds like C section will be most likely scenario from your experiences.

@Moancup – I’m getting weekly monitoring with CTG, urine and blood pressure checks (had that this morning and everything was OK), plus fortnightly scans with the consultant in FMU, wish the scans were more frequent!! Next one is Weds 13th.

So sorry to hear your consultant thinks things will get worse ☹ Got everything crossed for you that they can hold out as long as possible.

Well done on the colostrum collection, full syringe is impressive from what I’ve been told! Think I’ll give it try too, definitely reassuring to know you have that to hand for when he’s born.

I’ve told a few people at work and close family, people keep asking how things are and I didn’t know what to say really, trying to keep it light-hearted (though it feels anything but!) and just saying she’s not growing as much as they’d like so I’m being monitored and she may need to come early, no more detail than that.

@theotherfossilsister – I’ll be thinking of you tomorrow for your FMU appointment, let us know how you get on. The anxiety is so horrible, look after yourself today. Really hoping you can get to 34 (or further!)

I had NIPT at 14 weeks and that came back low risk, dunno why our sonographer last week brought up chromosomal issues again after that, but consultant said it's unlikely but can't be 100% ruled out. I wasn't aware of the potential autism link, we'll just see how things go.

Good news on passing this week’s tests @DCLon86 and I hope FMU also goes well for you tomorrow @theotherfossilsister I’m being seen on Thursday.

My anxiety is through the roof. I’m not sure how I’m going to cope with constantly being on high alert for something to go wrong. This is pretty alien to me, I’ve had an anxiety free pregnancy so far and I’m always the person who thinks it’s ok to have a bit of soft cheese, wine etc. I went for a walk earlier to try and destress and ended up sobbing in the park instead.

Re colostrum harvesting and early labour - it does seem to be a hypothetical risk but I found guidance that recommends women expecting twins start sooner because they have a higher risk of early birth. I was also very struck by a comment on here that if it worked then everyone would be doing it to induce labour! See what I mean about being blasé about risks… it might be worth a quick chat with your midwife though if you are worried.

@Moancup I absolutely know what you mean about the anxiety. It can be excruciating especially just before scan day. I will definitely ask midwife about colostrum.

@DCLon86 I think if you had nipt then chromosomal is unlikely. I'm preparing myself to have an autistic baby though and although it's hard the world is becoming more accepting.

Every time I think about tomorrow I feel ill. We had the neonatal counsellor today and she was lovely though and helped me feel better.

Every Thursday I feel we are a week closer to safety.

Oh I've told everyone to some extent. I'm off work and pretty sure my colleagues know why.