To ask what kind of support you wish there were more of after miscarriage/pregnancy loss?

[SproutTime]

I spent a good few years of my life going through recurrent miscarriage/pregnancy loss.

It has left me a very different person and I don't think it will ever leave me completely.

I have been very vocal on my SM about my experience and from that I have had a lot of women contact me going through similar things. Some good friends, others who just happened to see my posts. All just searching for someone to talk to really and who gets it.

I am keen to try and do something more with this. This struggle is in my heart completely. My husband thinks perhaps starting with a blog of our journey to share with others would be a good start, which I am looking to put together.

But, whilst I know my own feelings on the subject, I just wondered if anyone else had wished there had been more support for them and in what form?

I had a miscarriage in September and even though I know the NHS is overstretched (especially at the moment), I was really surprised that they just sent me on my way without any kind of follow up or offer of further support. I didn't need medical intervention so I was literally just told I'd miscarried and then sent home. We know how woeful mental health support is in the UK but I wish I had been offered a few sessions of counselling, or even just a follow up phone call to check in.

For me pregnancy loss Facebook groups/Instagram has been the biggest source of support. It would be great if there was an in-person support group in my area, or some other way of connecting with local women who have experienced the same thing.

I wholeheartedly agree with @JanQi. I've had two miscarriages, the first of which was a MMC and picked up at the 12 week scan. I chose to have an MVA under a local, after which I was asked to stay for an hour so they could monitor blood loss, given a biscuit and then waved on my way. No contact afterwards from the community midwife and we weren't given any info on where we could go to access support. The second one was no better. Even a call from the GP would be better than nothing just to 'check in'.

It is appalling that so many women and their partners have to go through this and feel like they have to shout to get the support that they may need or go through the grief in silence not knowing there are support groups out there.

I had a miscarriage 5 years ago at 10 weeks, and like the PP was just sent on my way after the scan confirmed it.

I then had some complications with retained products and ended up in hospital for 2 days although it did complete naturally in the end but I needed a blood transfusion after haemorrhaging.

I wish they’d told me at that scan what “could” happen next. I was totally unprepared, my husband had gone off to work as they’d sent me home to miscarry naturally and there was no question about that not being the way it would go. I naively thought it would be like a bad period.

If I hadn’t called an ambulance, I would have bled to death on my own. My DH thought I was massively overreacting when I called to tell him that I’d called an ambulance as I was bleeding too much as the hospital were so causal about it at the scan.

He arrived at the same time as the ambulance and couldn’t believe how much blood there was all over the house/me.

I was also given no follow up after that admission. Not even a leaflet to tell me what to expect - things like my next period would be horrendous, my hormones would be insane and I’ll I’d be able to think about would be getting pregnant again immediately.

Also, no follow up for DH. He had to go home while I stayed in hospital and opened the front door to this huge trail of blood he needed to clear up. He was traumatised but there is no support for the partners.

Where to start.

Access to EPAU, self referral and to talk to someone trained in miscarriage management.

A person to talk to about treatment options.
You know, medical, surgical, that kind of thing.

Someone to tell you what to do if it gets bad, pain bleeding. Where to go, what to expect.

A& E drs and nurses to have at least a tiny amount of training on how to speak to & manage people who present with miscarriage.

People to just fuck off with their dismissive attitudes.

I wish more people, women especially, understood how common it is and how to support someone after it. I had a miscarriage earlier this year (and obviously lockdown didn’t help - it was over a month before I could have a scan to confirm what had happened). It really floored me, I had no “template” (sorry, wrong word, but for shorthand) to how I might feel or what I may want to do to recover from it. There are resources out there, but if you’re in at the deep end you wouldn’t know that.

And I had some appalling comments from a close friend which still ring in my ears. Not from malice, just anxious foot in mouth. I remember months later seeing a post on here titled something like “How to support a friend going through miscarriage” and I cried thinking how much of a difference it would have made to me if she (and others) had read it when I was going through MC.

So awareness generally I’d say. But “awareness” can sound a bit woolly or vague. And it’s hard to pitch discussions around miscarriage, because no one wants to pitch up at NCT/rhyme time and say hey, this is something that may affect you or someone you’re close to.

I had 5 mcs over 3 years before I had my DD last year. My biggest source of support was this place. The brutal honestly, sense of humour, empathy, compassion, practical and emotional support of the women I connected with was vast and kept me sane through the nightmare. Some of them have become friends in RL and I honestly don’t know how I’d have got through it without them. There was a very long thread someone had put up years before, I can’t remember what it was called, which gave the raw facts about what going through a MC at home was like. Lots of people asked for it to be a pinned post, it was graphic, informative and very helpful.

I was really lucky with the RMC we were referred to, my consultant was incredible and we’re still in touch now. I’m not sure what my expectations were of the NHS but my GP, the nurses at the GP, the EPU and the hospital I had two surgeries in for MMC were also pretty good. The EPU gives out leaflets from the miscarriage association which were comprehensive and covered most of what I needed. I came across the odd blog and read about what other women had gone through but never shared any of it on social media (apart from MN) and still wouldn’t. It was a profoundly personal experience and when it was a lonely time I lucky to have DH, my MN gang and our consultant.

How are you doing now OP?

A follow up would be good - you don't hear from the EPU or your own GP afterwards. My own EPU have me rather bad advice about how long the mc would last - well it's bit surprising they don't know given they don't speak to you after confirming there's no heartbeat.

Seems so far like follow up support is a big thing for many of us. I agree, there doesn't seem to be any. I think I once had the vague mention of counselling after I'd just been told (so not in a good enough frame of mind to retain much info) but nothing more was said.

I don't know about everyone else but I think I did receive a leaflet of some sort with a number I could call if I wanted to but personally I think someone contacting you would be more beneficial.

How are you doing now OP?

I'm doing okay thank you. Still suffering some ripple effects I think in the form of ongoing anxiety which I never had before. I panic about things going wrong or 'bad' things happening a lot more than I ever did before.

I'm quite far down the line now, my issues were some time ago. But it goes to show just how long lasting the effects can be.

My son was stillborn. We knew this and I had to go in and be induced. I think the hardest part was just being in the Labour ward and hearing new babies crying. Would have been better if I could have been somewhere else although I have no idea where that would be. My hospitals now fundraising for a separate ward for mums going through the same thing.

Agree about after support. My daughter died the day after she was born and I’d had an emergency c section. I didn’t see a single medical professional for a check up, either mentally or physically, after I left the hospital (around 48 hours later). If she’d lived, things like the six week check up etc would have been standard for the mother but apparently not when your baby is dead. 🤷🏻‍♀️

I'm really sorry for both your losses