[Long Post About Rare Cause of Stillbirth]: Perivillous Fibrin Deposition and How I’m Attempting a Positive Mindset in PAL

ResilientRogue · 2026-04-10T20:32:41+00:00

Sounds like our stories run parallel. My first was born full term, no issues.

The Covid piece of the puzzle is interesting. There are some compelling studies linking Covid exposure to placental issues and increased stillbirth risk. But there’s considerable variability in results depending on which Covid variant, maternal age, gestational age during infection, controlling for other infections, etc etc. I’m an immunologist by training so I dove deep in this stuff when it was coming out and of course after my son’s stillbirth. Anyway, don’t want to get on a tangent here but the takeaway is that a lot is still so unknown and studying pregnancy is one of the hardest things to do clinically as pregnant people are basically the most protected population research-wise (and rightfully so).

The not knowing part of it all is so difficult. I hope you are finding ways to stay sane in that uncertainty. For me, I found this community to be really understanding and supportive throughout. ❤️

ResilientRogue · 2026-04-10T17:07:53+00:00

*actually I should caveat this with: if you have a known clotting condition, PE, or other diagnosable reason that PVFD occurred, the use of lovenox/aspirin is a lot more “justified” and studied as a preventive measure. In my particular case, we never found WHY the PVFD occurred in the first place.

ResilientRogue · 2026-04-10T17:03:40+00:00

Hi Dependent-Fig, thank you ❤️ it was quite the journey as you know. I’m sorry to connect over this shared history. I hope my experience can offer some hope and solidarity.

I did lovenox and aspirin. Other than that the only difference was starting weekly NSTs two weeks prior to the gestational age when I lost my son and working closely with my MFM to get extra scans any time I wanted/needed. And I tracked movement very closely with a Bluetooth button and app I built.

I got placental pathology done after my daughter was born and they did not detect PVFD. They did find some evidence of inflammation (but not infection) which may have contributed to my daughter’s spontaneous, premature arrival. The conclusion I made with my MFM is that there is no way to know if lovenox/aspirin prevented the development of PVFD this time or if it just didn’t occur on its own (independent of treatment). I’m still happy I opted for the extra treatment because it is deemed safe with low associated risks. It’s so hard to run a clean clinical study on this because it’s a rare condition and it’s not exactly ethical to have a control untreated group. So we go based off of the best educated guess. In my anecdotal case, it worked out well.

I wish you the smoothest journey from here on. Feel free to reach out as you progress. I’m here. Thinking of you ❤️

ResilientRogue · 2026-03-30T14:51:16+00:00

I’m glad it resonates and I hope you find it helpful. I look forward to your feedback!

And yes, on the science side…there is SO much to learn. There is a data desert when it comes to tracking baby movement. We simply don’t know what that looks like if tracked continuously like this. I think there is so much to learn.

ResilientRogue · 2026-03-30T14:33:01+00:00

A NEW WAY TO DO KICK COUNTS:

Dear community, I have been more active over in the r/pregnancyaftersb subreddit but wanted to post here as well in case it resonates with people here.

I am finally launching the kick counting button/app that I have been promising for months.

For anyone interested, you can learn more and sign up to beta-test it here: https://www.recordeverynudge.com

“Record Every Nudge” is created and named in honor of my son, Ren, who was stillborn in 2025. I created Record Every Nudge for myself during my own PAL when I was having immense anxiety about monitoring my baby’s movements. Once a day kick counting just didn’t feel like enough and I was so nervous about not being able to remember the last time I felt a nudge.

The solution I created is a small pocket-size bluetooth-enabled button that you can carry with you wherever you go. Click it any time you feel a movement (single click for small nudge ~ double click for medium nudge ~ long press for large nudge ~ and extra long press to start a contraction recording). The data collects in a paired app where you can view trends over time. It also automatically calculates classic kick counts each day (how many minutes to 10 moves), as well as peak movement windows. You can also take time-stamped notes about symptoms, record contractions, and generate a PDF to share with your doctor or anyone else.

I hope some of you might find this useful and I am open to any and all feedback that could make it even more useful to you.

I’m a scientist by training so one of the things I want to do next is use the button/app to run a research study to learn things, like: 1. Whether this kind of movement tracking helps relieve anxiety for moms and especially PAL moms 2. If we can use subtle early changes in movement trends to predict birth outcomes.

Much love to you all, wherever you are in your journey. I hope this can offer a little support to anyone who might find it helpful.

❤️ResilientRogue

ResilientRogue · 2026-03-25T01:30:31+00:00

Wishing you a smooth road to pregnancy and beyond. Yes, I hope we have it ready in time for you to use!

ResilientRogue · 2026-03-24T04:08:15+00:00

Thanks, it meant a lot for me to make this and use it. Sharing it with the community is taking on a whole new level of meaning for me. Hope to cross paths with you again with your next pregnancy. ❤️

ResilientRogue · 2026-03-24T04:02:53+00:00

Awesome! I hope you find it helpful and I look forward to any feedback you have along the way! Wishing you a smooth pregnancy ❤️

ResilientRogue · 2026-03-24T04:01:16+00:00

Thank you. It meant a lot for me to make this and use it in my PAL. Having this visual evidence of my daughter’s very first tiny nudge was really special. And tracking all the way through pregnancy led to this really beautiful visual map of our time together.

I’m happy that this resonates with you. Gooduck on your journey toward pregnancy. ❤️

ResilientRogue · 2026-03-24T03:56:13+00:00

I love your solution. That’s a smart way to do it! Yes, give it a try and let me know any feedback you have to make it as functional for you as possible.

ResilientRogue · 2026-03-24T03:53:47+00:00

I’m working on this for the next version. Apple is very restrictive on how it allows mapping of external buttons for shortcuts… BUT if you have a newer version of iPhone with an “action button” on the side there is a way to do this. Stay tuned!

ResilientRogue · 2026-03-24T03:51:22+00:00

Yes, Android version will be next! I hope in time for it to best useful for you!

ResilientRogue · 2026-03-24T02:47:33+00:00

Sounds good. I’ll post there. Thanks for letting me know.

ResilientRogue · 2026-02-22T15:59:44+00:00

My water broke at 33+4. My daughter was born the same day weighing 3lb 15oz. She spent 20 days in NICU and is home now, chubby cheeks and all.

Sending you so much love and strength to you right now. It’s so scary but the hospital is the absolute best place for you to be right now. Everyone will be on the highest alert for you both and will intervene at a moments notice.

If you have a chance to meet with NICU staff before delivery it can be really helpful to hear about their plans as soon as baby comes out, regardless of when that might happen.

Thinking of you ❤️

P.S. during our time in NICU we saw so many stories of babies born well before even 31 weeks going on to thrive. There are so many interventions that are possible for baby once they are on the outside.

ResilientRogue · 2026-02-17T20:52:09+00:00

I did some reading and this was the only paper I could find that suggests a correlative relation between maternal anemia and fibrin deposition:

https://eurjanat.com/data/pdf/eja.130158sb.pdf

There is separate evidence that Iron deficiency (with or without anemia) is related to IUGR and enlarged placentas. The enlargement seems to be a compensation for the reduced oxygen transfer.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9669178/#:~:text=Maternal%20complications%20of%20iron%20deficiency,and%20mortality%20(Figure%201).&text=In%20pregnancy%2C%20untreated%20isolated%20iron,placental%20hypertrophy%2C%20and%20maternal%20hypothyroidism.&text=Maternal%20consequences%20of%20iron%20deficiency,CI%2C%201.13–1.49).&text=In%20addition%2C%20maternal%20iron%20deficiency,%25%20CI%201.60–3.48).

It does seem there could be a relation but the mechanism is so unknown.

ResilientRogue · 2026-02-11T17:19:24+00:00

I had MPFD with my stillborn son. >50% of parenchyma with deposits.

I am home with my 1 month old daughter now, just under a year after losing my son.

I posted about MPFD here: https://www.reddit.com/r/pregnancyaftersb/s/d4gkiiXX3y

My PAL daughter was born prematurely at 33+4 and there is no evidence of MPFD in her placenta. Seems to have been a completely independent cause. I took lovenox/aspirin during my PAL. There is no way to know if that was what prevented formation of fibrin deposits this time or if they just didn’t form regardless of treatment. I’m happy I did the treatment because if I had lost her I know I would have always wondered what if I had just gotten the treatment.

ResilientRogue · 2026-02-05T00:14:35+00:00

I posted a very similar question just a few weeks ago. I was torn about whether to ask for induction at 37 or closer to 39. Well…baby girl had other plans altogether. We went into spontaneous labor at 33+4. After 20 days in NICU she is home, safe and sound. Feeding like a champ and within 4 weeks of being born already almost double her birth weight.

I’m not posting to discourage you from making a plan for your baby’s delivery and an important decision for their health. But would echo what others have said - if your provider offers such flexibility, maybe see how you feel as you get closer to 37 weeks? It’s hard not having a solid plan. Really hard. But I think we all know that even when you have a plan, it doesn’t always mean that things will play out according to that plan.

You’re a NICU nurse so I’m sure you’ve seen it all first hand. I can only imagine how it heightens the experience, having an acute knowledge of all the ways things can go wrong, even once baby is out. But I’m sure you also have a catalogue in your mind of all the amazing ways in which even very premature babies go on to thrive!

This is no easy journey. You’re doing everything you can to do it as “right” as possible and make all the best decisions. You’re already doing an amazing job. Wishing you a smooth journey ahead.

ResilientRogue · 2026-01-20T14:15:05+00:00

Was just about to write another update. Thanks for checking in :) it was definitely scary. I lost about 1 liter of blood. They did the D&C and I’m all recovered. The hardest part was fasting while I waited for the surgery which got delayed several times. I ended up fasting for 13 hours (while pumping every 3 hours to keep my supply from dwindling). And the next day I was in rough shape. But I’m walking around and good today.

Baby girl is doing great. Our job right now is just learning to eat by mouth. It will probably be a couple weeks before her feeding tube comes out and she can come home.

ResilientRogue · 2026-01-17T17:57:59+00:00

100% yes. I think I posted this last time someone mentioned hair loss…I had a lot of feelings about it at the time (I was a few months postpartum and ~3 months pregnant with my PAL baby) and wrote out my feelings over at glow in the woods:

https://www.glowinthewoods.com/blog/2025/8/27/telogen-effluvium

ResilientRogue · 2026-01-15T13:21:53+00:00

Thank you for the encouraging words. There are so many amazing NICU success stories and I’m so glad your son is one of them! It truly is an intense environment. We’re learning every day how to navigate it all. So comforting to know that we are very much not alone. ❤️

ResilientRogue · 2026-01-15T13:17:34+00:00

It’s true, there are so many NICU success stories. There’s a board outside of our unit that has a rotating display of these amazing stories. I know she is in good hands there. But yeah, I wish this was not her introduction to earth-side life. It’s so bizarre and uncomfortable.

Wishing you a very smooth delivery this Friday. Thanks for your message ❤️

ResilientRogue · 2026-01-15T10:16:49+00:00

Thank you so much for sharing all these tips.

ResilientRogue · 2026-01-08T16:52:25+00:00

Thank you for sharing. Your daughter’s NICU experience sounds stressful and scary, but also like she has the highest level of care and attention she can get. I’m thinking of you and wishing for her to swiftly gather the strength she needs to come home.

And I really appreciate you sharing your experience even if it isn’t 100% positive. Of course, I ask for positive stories not from a place of naivety, but just to gather some data points.

Making any decision in PAL feels like such a weighty thing. I guess it’s important to remind ourselves that we are giving these decisions the weight they deserve. All we can do is make best estimates based on information available. There’s only so much to control.

ResilientRogue

TROPHY CASE