Post-Mortem meeting after late miscarriage/stillbirth

[JenShakespeare]

Hi everyone, we recently lost our beautiful little boy, Bertie,after I suffered PPROM and cord prolapse, at 22 weeks. We opted to have the post mortem as I have also had two early losses this year and immediately prior to PPROM, at the anatomy scan, it was found that he potentially had a brain abnormality.

So there are few things that we are hoping (although not expecting) the post mortem can help with, and help us plan for future pregnancies.

Has anyone had any experience of attending the meeting for the results? We've been advised it would be about 12 weeks after his birth but we haven't had an appointment through yet. I'm getting quite anxious about it, and wondered if anyone that has had an experience of this, what the meeting entails, do we get a copy of the report etc? Things like that.

Any help/advice would be really appreciated!

I’m so sorry about your Bertie - it is a tragedy.

Due to my work I’ve attended quite a few of these meetings. Usually it is 6-12 weeks after the death. I can explain why in honest but simple terms.

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It can take that long for all the samples taken at the post mortem to be fixed in formalin and then turned into tiny slides, analysed and reported on.

Although this is a long wait, there is nothing more hopeless than going to the meeting and hearing ‘not all the results are back yet’. It is just too much to bear. So it is better to wait a little longer and have exhausted all avenues.

I am sure whoever looked after Bertie explained to you that very often, a PM gives us no knowledge about why a baby died. Depending on what sort of PM you opted for will depend on the level of knowledge (if any) gleaned. On a basic level, we sometimes learn the most from the placenta.

At the meeting your consultant or midwife will go through the event of your labour/induction, Bertie’s birth and then his PM. There will be a written report and you can ask for a copy. Later, after the meeting, you will get a letter summarising the meeting - sometimes it is overwhelming and the letter can help consolidate things.

I would suggest writing down all your questions and then, at the end of the meeting, handing them to whoever you meet with to sort of go through them and ‘tick them off’ so you know you asked all the things you wanted to.

Im so sorry for your loss.

I don't have any advice to offer OP other than I am so so sorry for your loss

Sorry for your loss. We had a post mortem for DC1 but it was a neonatal loss. As we had been discharged and it was an unexpected death the police had to be involved so had to get one done. Due to this it was reasonably quick and it was an obvious cause once they did it.

Write all your questions down and any answers. Hopefully they will be able to find the cause but aware that they can't always.

We have gone on to have 2 healthy DC and received really good care throughout the pregnancies.

Thank you so much, this is really helpful. We're almost at 12 weeks now, which is when they said we would have the the appointment so I'll give it another couple of weeks and if we've not heard anything I'll give them a call.

I'm so sorry you are going through this. I've been to a meeting about post-mortem results for my own baby in a similar scenario to you (pprom before viability). Consultant from foetal medicine was there plus bereavement midwife. They went through the report but I was too tense and distressed to make sense of a lot of what they were saying. They were very kind but I don't think they can really understand how horrific it is for us.

I was given a copy of the report but it is quite a hard read. It describes things like how much the baby's brain weighed and so on. There were a few little details that may or may not have contributed which was quite difficult. There were mentions of tests which we never seemed to get the results of, and when I followed this up later the response was dismissive e.g" I'm sure they'd have let you know if there was anything to worry about"

Be kind to yourself and don't have high expectations about the meeting. I would suggest asking for contact details so you can ask any questions later once you have had chance to process and come to terms with the results. Hopefully you have a kind bereavement midwife too.

Oh my word, I'm so sorry you've been through that. But I'm so glad you've gone on to have happier times!

Thank you so much for sharing your experience. I think we both have pretty realistic expectations about the results, but it's really helpful to have an idea about the more specific details about the meeting and how things etc. I did realise how much of a control freak I was until this last few months when everything has been out of my control!

I am so so sorry for your loss of your baby boy Bertie, I lost my baby boy Oscar at 36 weeks. I really hope you are doing ok.
My points are similar to some already on here but my experience was that we unfortunately waited 5 months for the post mortem and genetic results for Oscar. When the meeting finally came around it was with the consultant in fetal medicine. She went through the report verbally and then gave us a copy, very in depth and hard to read as it’s in such detail down to the fact Oscars hair was 20mm long. Oscar had multiple bleeds on his brain with no known cause.
We then got a follow up letter in the post to summarise the meeting and it also explains what care will be in place for me when I do get pregnant again, consultant led care and reassurance scans.
maybe be prepared that in the meeting the questions you really want to ask might possibly not be coming to you due to the stress so be sure to get the consultants secretary's details so you can ask further questions when you need to/have thought of them when you have recouped.

I hope you get some answers that help you in this process xxx

Thank you so much for responding, I'm so sorry about Oscar, I can't imagine what it was like losing him so far along. I hope you are doing well now!

That is really helpful to know about the letter you received afterwards regarding future pregnancies, I am hoping that we get a similar level of support and planning! We spoke to a midwife recently who works in Manchester at a specialist clinic for women who have experienced this type of loss and the support sounded incredible... however I don't think my Trust offers such an specialist service, but I guess I will have to wait and see. X

I cannot offer advice but I just want to say how sorry I am for you with the loss of little Bertie 💐I'm so sorry xx

I experienced reduced movement on our 26th week of pregnancy so went to our labour ward to be checked, my baby had a heartbeat but wasn't moving at all. I had to have an emergency c-section which was a shock itself. It was a girl I was so hoping for. Our baby girl Charlotte had severe anaemia and was very poorly. She was 1.7 pounds. She spent 3 days in NICU where we were able to squeeze her tiny hands and stroke her soft skin until she sadly passed away having suffered a brain haemorrhage.

Charlotte would have been our first child after going through a hard IVF journey. We now have to wait for post mortem results and will have to start IVF all over again. We have also been told results will take 3-4 months which makes this all very difficult as we wait for answers if there are any.

I hope you get the answers soon, I hope your IVF journey brings you happier moments in the future. 🖤

Hey everyone, I just thought I would update this post as we've had our debrief today and thought it might be useful for anyone else looking for advice in the future.

The meeting took around an hour and a half in total, with the fetal medicine consultant and bereavement midwife (both of whom we know and have been with us during this miserable journey).

Due to Bertie's gestation and therefore his size they were somewhat limited in some of the testing that they could do, however they had done an MRI which confirmed the brain abnormality which had been picked up at the 20 week scan.

They were able to confirm that there was no infection present and it appears that the PPROM is just a case of bad luck, which is somewhat comforting and also not at the same time.

I had submitted all of my questions to the consultant beforehand and she was able to answer all of them fully and gave us huge reassurances about what our next pregnancies will look like, in terms of support, extra scans etc. We've been referred to the recurrent miscarriages unit, pre-term birth unit & also for genetic testing (which they took bloods for today) as they found a slight abnormality with one of the chromosomes - although she didn't seem worried or concerned about this.

So, overall it was actually quite a positive experience (if that's the right way of putting it!? Who knows... but I was fearful I would
leave feeling palmed off or frustrated and I wasn't)... and it really feels that our beautiful boy has helped us in every way that he could possibly have done if he wasn't able to stay in this world.

I hope this is somewhat useful if anyone is looking in the future and thank you so much to everyone who replied and helped me 🖤

I am so glad you found it useful and little Bertie has been looked after. I did pprom in 2 of my pregnancies (one much later in pregnancy so no big problems) and in every pregnancy I had, my labour started with my waters breaking. With my baby that died, I do wonder if my body knew there was something wrong and just pressed the button early. I'm not sure what Bertie's brain difference was, but maybe it's similar for you, and he just couldn't stay. I bet he would have been a lovely baby. Now you know there's nothing you could have done differently and you'll have loads of extra support if you want to try again.

You've absolutely hit the nail on the head, and he's given us so much help for us to hopefully go on and have future babies, for that we'll always be so grateful.