The Baby Loss Hub - Recurrent Miscarriage - hanging on to hope.
I remember it so well. It was 3am on the 26th September 2019. I couldn’t sleep. I was tossing and turning, and so I dragged my emotionally drained and pregnant body into the spare bed. I was pregnant but I wasn’t. Waiting for dawn to get ready to go to hospital for surgery. Time was dragging then racing, and yet I wasn’t ready to say goodbye. You are never ready to say goodbye. I looked through my baby apps. You may not know but they have a switch for when you’re no longer pregnant. A hard but necessary part of building an app.
As the light of the purple and pink hues of the app filled the dark room it was there that it hit me, ‘you are not alone, 1 in 4 pregnancies end in miscarriage’. This was number 2. I didn’t even know that this part of the app existed.
I then sent myself down the rabbit hole of why. WHY does this happen and why me? What had I done? Should I have stopped running? Did I eat something? Am I capable of carrying a baby? Did I not want it enough? Was it DNA? The more I looked the less I found, except Tommy’s. A beacon of hope in a vast valley of women sharing their stories. I didn’t want stories, I hadn’t got my head around mine. I wanted facts. Cold hard facts.
None of those wonderful women could offer even a strand of answers or hope. I didn’t want them to normalise it, I wanted them to tell me why. They couldn’t. I now realise for the same reason as me. They just didn’t know.
In the middle of the night, with my heart broken into pieces that I don’t think have ever really been able to come back together, the cold reality was there. I just didn’t know it. No one knows why we miscarry.
If you find out why, then you are part of the lucky ones. Strange? Luck. There’s nothing lucky about miscarriage. Oh I can assure you, after 6 and still not having a reason, I’d take a reason over none.
With every pregnancy, I have waited to be proved wrong only for the disappointment to prevail. The tests and the hope. The watching people grow their families all around you and all you want to know is why. The trying to add in medications, a spoonful of hope. Doesn’t work.
The time it takes for clinic appointments and bloods and disappointment is long and in between you’re lost at sea. Time is time but it feels so slow when you are waiting, waiting for nothing perhaps.
The things that helped were hope. I found announcements so hard but instead of muting accounts, I followed them. My friends and families pregnancies. I needed to hang on to hope. I needed to know that pregnancies happen and babies are born. I needed something to believe in. A strand of hope in despair. At the bottom of Pandora ’s Box, all that was left was hope.
I re-read Elle Wrights first book ‘ask me his name’. It’s beautiful and whilst I hadn’t lost a baby at term, the feeling of loss resonated with me. She spoke to me.
I read Tommy’s website daily. I read up on all sorts of scientific papers, from the Royal College of Obstetricians and Gynaecologists, to the Lancet, and every other peer reviewed paper I could find online. The Miscarriage Association has been helpful but I find their information not very reader friendly and when it the pandemic and I was suffering horrific pain from loss the website just said ‘don’t go to your EPAU’. Didn’t tell me where to go. I ended up on the surgical assessment unit in the end. It was half answers I’m afraid.
I followed The Hormonal Health Coach and it gave me focus and daily activities.
I chased my GP. I cannot tell you how hard it is to constantly call up a GP and have to cancel yet another booking appointment, that I would leave later and later with each positive test. I made them change their protocol so all parents would get a same day call back to discuss their mental health. The courage it takes to say ‘my baby has died’ doesn’t get any easier the more you say it or the more it happens. It cuts a fresh wound each and every time.
I set up an Instagram page to talk about loss and found more support and understanding, genuine friendships, stories of hope, stories of pain. A place of belonging. I wanted to give back, I wanted to heal and I wanted a hangout space that didn’t start with, ‘one day’, ‘just keep trying’, ‘have you tried surrogacy’.
Resources for miscarriage are in short supply. Perhaps it’s so common it’s just not invested in. Perhaps because you can’t stop it, it’s not seen, it’s not heard in a way that supports. It should be. I still don’t have an answer as to why it happens to me. It’s shown me resilience I never knew I had. It’s given me knowledge and understanding and perhaps that’s why I’ve had to go through it. To know in some small part what my clients feel. I hang on to hope each and every day for them and for me. That’s all I want, what we deserve.