I’ve not told this story in full yet. I’ve not felt strong enough. Until now.
Today has been a really bad day.
I’m playing over and over the day we lost Charlie. I can feel it hurting my head in a physical way yet it’s a mental pain. How do you explain that? I imagine this is what they call PTSD.
I wanted to write this post, not to be morbid but because I believe strongly in speaking up and showing others that its ok to do so. I’ve become so acutely aware of mental health since all this happened to Lizz and I and I feel like the only way these things improve is if people share their stories and help others to be ok with it.
Caveat - If you’d rather not read this I will totally understand. Its not nice.
For anyone that doesn’t know my story, in 2018 after having two wonderful children Oscar and Alexa we lost our third baby, Sophie at 22 weeks with a condition called Hypoplastic Left Heart. Going through that was horrendous. That far on you have to give birth naturally – something I’d had no idea about until we were in that position. In 2019 we tried again and fell pregnant in the Spring. At our first scan we were told that our new baby also had a heart defect, but it wasn’t known how bad. We spent the next few months travelling up and down to Bristol from Exeter, speaking to specialists. The extent of the defect became easier to see as Charlie grew but no-one could tell us if he’d survive or not. Drawing on every last piece of optimism and hope, we thought he’d be born, go through surgery and live a normal life.
As the months drew on, things got worse. Liquid (hydrops) started to form around his body. This signifies the heart’s not working correctly. Monthly checks became weekly then daily, then the call was made – give birth now or Charlie wouldn’t make it.
I lost count of how many times we were told he might not make it through the night during those last few weeks. As he fought on we had hopes that this showed he was a fighter and he’d be strong enough to pull through. Every time, he seemed to surprise the consultants, specialists and Lizz & I so we were hopeful of a happy ending.
Even on the day of the birth we were confident. After the caesarean, right in front of us, the hydrops in Charlie’s body were drained immediately and he was put on a life support machine but we were able to see and touch him briefly as he was taken past us to NICU (neonatal intensive care unit). We both went back to the ward and I was called up to see him. The plan was to stabilise him then prepare for surgery.
As I went into NICU, alarms were going off and there were about 10-15 people surrounding Charlie. I remember clearly a doctor using his fingers to pump Charlies tiny heart and resuscitate him. This memory will be etched in my mind for ever. It’s the one that’s been playing over and over today. They stabilised him but I knew it wasn’t good. There were more wires and drips going into him than I’d ever seen on anyone before, especially that tiny.
They explained to me that things weren’t good and I asked immediately that Lizz be bought up in her bed. They didn’t normally allow this but they made an exception. For the next six hours we lay with Charlie on Lizz’s chest, skin to skin, hoping and praying that he was strong enough to get through this but I could see in the eyes of the doctors and the way they spoke to us that it wasn’t the outcome we were going to get.
After six hours the most senior consultant came and told us that the only reason he was alive was due to the machines and that his heart was so bad that his body had no oxygen in it. Even if he did make some sort of miraculous recovery, his cognitive functions would have been badly damaged. We were advised to turn the machines off.
I really hope you don’t mind me sharing this sombre story but as the months and now years start to roll on, I recognise just how damaging personal trauma is to one’s mental health and if this story resonates with one person and helps them understand that they are not alone then it will have been worth the pain in writing it (I’m currently writing it at arms length to keep the tears from hitting the keyboard!)
We’re now a year and four months since Charlie passed away. There has of course been the small matter of a global pandemic to try and navigate but there are days when things are still very raw. Today is one of those. I woke up this morning, started getting flash backs to the moment I entered NICU and completely lost it. I had to phone my work colleagues and tell them I couldn’t come in. They are amazing and in fact Becky suggested I write this to gather my own thoughts. It was my idea to go public with it but I just want to help others.
I think I’m still grieving. We had four months before Covid hit and I’ve not had the chance to process things properly. I wanted to write this publicly because its important that people speak up. Particularly men. In the first six months after losing Charlie I stayed strong for Lizz and then I lost it. I really bottled things up and then I paid for it. I’ve written fairly extensively about my coping mechanisms and new routines so I’m not going to go into those again here. I’m probably about 80% better now thanks to everything I’ve changed in my life but there have been dark times and dark days for sure. As time goes on I feel stronger and more confident to write about these times and I hope I can turn this horrendous life trauma into something that helps more people.
Over the last six months I’ve shared an abridged version of this story on a few platforms (mainly clubhouse) and the feedback and love I’ve got from doing so is another reason for putting pen to paper today. I’ve even met a guy in an almost identical situation to me and we’re now talking regularly and looking out for each other. If I hadn’t shared, that wouldn’t have happened.
In showing that I’m strong enough to share my story I’m hoping others will and that someone, somewhere might be saved because of it.
Poem for Charlie – This was read at his funeral
You never said I’m leaving
You never said goodbye
You were gone before I knew it
And only god knew why.
A million times we’ve needed you
A million times we’ve cried
If love alone could’ve saved you
You never would have died.
In life we loved you dearly
In death we love you still
In our hearts you hold a place
No one else will ever fill.
It broke our hearts to lose you
But you didn’t go alone
Part of us went with you
The day god took you home.
Rest in peace our beautiful little Charlie xxx