APS and pregnancy after loss (TW stillbirth)

[HollieAlice]

Hello,

I'm not really sure why I'm posting. I think I would just like to find someone who has been through anything similar.

My son was stillborn in September following a complete placental abruption. I'd had a massive Subchorionic hematoma for most of the pregnancy that bled continuously. I lost 9L of blood just over the last 4 weeks of pregnancy but the placental histology found lots of microclots and large areas of necrotic tissue so I was tested for APS and found to be positive.

We have tried again and I am currently 20 weeks. The placenta is again showing problems (2 x medium sized SCH's at both ends of the placenta and a subamniotic hematoma) so Ive been taken off aspirin due to the bleeding risk but kept on a lower dose of heparin. The baby is growing well currently which the consultant said is reassuring but so did my last baby up until the point of abruption.

I appreciate its an uncommon situation but I'm looking for anyone that has experienced similar issues but has gone on to have a living baby/less traumatic experience. I was originally told that what happened with my son was incredibly rare and not at all likely to happen again but then all the scans have showed recurring problems so I'm feeling really anxious.

Thank you 😊

I couldn't go past this post without stopping. I too am a stillbirth mama and have since had 2 miscarriages and am pregnant again but very early days. I don't know how we get through the mental side of subsequent pregnancies but it seems we do. Sending you so much love and hope you get some support here xx

Thank you for taking the time to reply, I am so sorry for your losses. It certainly feels like such a long and difficult process after loss; not a very happy time at all. I'll keep everything crossed that things go well for you and baby xx

Hey! @HollieAlice
wanted to check in and see how your pregnancy was going?

I had my debrief earlier this month from my late miscarriage at 19 weeks in April 🥹

I had a placental abruption and having now received my notes from the debrief it mentions a few things similiar to you.

We are also TTC but in the back of my mind I worry about future pregnancies and as they cannot tell me how/why it happened its just on my mind alot.

thanks x

I’m so sorry this happened to all of you.

I have no personal experience but my mum went through something similar with her first baby. She lost him really late on and had no idea anything was wrong until it happened (was 39/40 years ago). She went in to have me and my brother afterwards. We were both induced early (2-3 weeks early) as the placenta issue happened right at the end of her pregnancy. She was past 37 weeks 😞. I don’t know all of the details as she doesn’t really like talking about it but I just wanted to let you know that she had no issues with her pregnancies or births with me or my brother and had no other losses

I hope you all your rainbow babies soon 💕

Hi @LM88, I'm really sorry to read about your loss 😞 I hope you and your partner are doing okay.

I've been really lucky and have made it to 33 weeks today- still growing well but still have the hematomas. I've been told the risk of abruption is higher but I have been put on a higher dose of heparin and progesterone pessaries which I'm still taking. I've had weekly scans since 16 weeks to monitor growth and placental blood flow in the hope that any change which might indicate an impending abruption would be picked up on and will be having an early planned c-section, if there are no problems before then.
I was told at 16 weeks that the placenta looked bad and they thought it would be unlikely to make it but, so far so good, and the placenta seems to, as far as we can tell, have actually improved over time. It can definitely feel quite hopeless when ttc/pregnant after a recent loss but there seems to be different management methods to make it feel safer and more hopeful although its rubbish to have to go through something so awful before getting the extra help/monitoring.

Pregnancy after loss, and the abruption, is terrifying and I found at the start that alot of clinic staff dismissed my previous experience with the whole 'it'll be fine this time round'. So I've been quite outspoken about my anxieties and what I want my care to look like. I have found that the rainbow clinic are amazing at going the extra mile to reassure and to put better plans in place to monitor and mitigate the risks of a future abruption.

It's so difficult not knowing why/how it happened. Were you tested for the antiphospholipid antibodies?
My hospital runs a pregnancy after loss support group and the bereavement midwife referred me to Maternal Mental Health services at my booking appointment. I've had weekly CBT/talk therapy sessions from them so there is support there to make it a more manageable time but I'll be honest in saying the fear of having to go through the loss again or having another abruption, hasn't gotten any better.

I really hope everything goes well for you in the future x

Thank you for posting @allgoodthings84. I'm very sorry to hear of your family's loss. I've met a few people who lost babies many years ago and they have all said that whilst it gets easier, the sadness never goes. I'm glad she went on to have no other problems, it's really reassuring to hear about the positive outcomes.

Hi OP, I'm so, so sorry for your loss 💔
Many gentle congratulations on your new pregnancy 🌈

I lost my first baby in 2021 at 33 weeks to TFMR as he was completely brain damaged due to recurrent strokes and seizures. I found out I was pregnant 6 months later, and that was the most difficult and longest nine months of my life.

I'm glad to hear that you're being outspoken about what care you need for your pregnancy. I felt the same, professionals (even she family and friends) told me "it'll be fine", but what they fail to see is that when you've experienced such a traumatic loss it becomes all your brain knows. I became obsessed with my daughter's movements because I was looking for reasons we may lose her. It meant I was in and out of triage. Between 24 and 36 weeks I bet I went in for monitoring somewhere between 12 and 15 times. Some midwives made me feel like a nuisance, but I'd do it again in another pregnancy if it's what I needed for reassurance.

Good luck with the remainder of your pregnancy. Keep fighting for what you need. Sending lots of love xx

reaching out for some hope !? I had exact same experience on Saturday last week. I nearly died and I lost my baby girl at 35 weeks x

I am so so so sorry to hear this. I’m sure your heart is in pieces. What did you call your little lady? I lost my little girl at 38+6 and it is just a cruel loss for any mama. I don’t know how I got through the days and weeks following this and I don’t think you even need to be thinking about anything right now… you are allowed to scream, cry and punch pillows for as long as it takes for you to feel a little less hurting? Lean on those around you and don’t let people ssh away her name. For what it is worth I had another little girl two years later and while that might seem impossible right now, not that she is a replacement but her being here as been so very healing for this mamas heart. My little girl who passed away would have been 4 this year and it still hurts my heart and soul but in a much quieter way. Sands were fantastic when I emailed them and I also had a bereavement midwife who stayed in touch with me. On a much simpler note… my partner and I felt like we could just sit and cry all evening, every evening because our hearts were broken but we were also utterly exhausted from the turmoil. We discovered stupid tv (Below Deck) and the mind numbing distraction became something we lived for… and for me I became really invested in 1000 piece jigsaws. I needed the distraction after a while to let my brain have a rest. I’m not sure what sort of advice you’re needing but hopefully something in the above will resonate with you and you’ll find the support you need amongst us mamas who have walked in your shoes. Sending the gentlest of hugs xx

@Clarita191 i called her Hallie. I’m had three miscarriages before her and ended up spending 10k at a fertility clinic to have her, and then get her ripped away from me a few weeks before she was due is just torture. I am so pleased to hear that you had another little girl this is honestly all my heart wants right now; I can’t bare thinking of a life without her or a daughter. I’m so worried about me finding it harder to get over than my husband and find it hard to accept the way he grieves. He’s been absolutely amazing so far the best husband ever I just hear it a lot rhar couples get torn apart by such grief xxxx