April 24th 2014 was the day Oscar died. It was the day that I always knew we would have to face. It was the day I had been terrified of since we got Oscar’s diagnosis. It is the day I didn’t know how I was ever expected to live through. It is also the day that I realised that Oscar still had it in him to throw us one last curveball. That as much as I had imagined what would happen and what it would feel like over and over in my head, things didn’t happen as I had imagined. Before Oscar was born, when we chose comfort care for him, I knew that I wanted to hold him as he died. That was our plan; to love and hold our baby for all the time he had. That was what I wrote in my notes in my birth plan. Being able to hold Oscar was my only wish. When our journey changed and Oscar was able to try surgery, I knew that it was likely Oscar wouldn’t die in my arms. That was something I had to get myself used to the idea of before we agreed to the surgery. I assumed he would be more likely to die in an operating theatre surrounded by strangers. Before his birth that was something we had decided we didn’t want. It was something that we had been sure was the wrong choice for Oscar, but then when surgery became an option I was surprised by how easily it then seemed like an acceptable risk to take. This was probably partly due to us having spent all that uninterrupted time with him on the day of his birth. Both of those choices were the right ones for us at the times we made them. That is one thing that I have always been very sure of.
On the morning of April 24th we moved away from Oscar’s bedside into a room to talk with one of Oscar’s doctors. He explained that he was pretty confident that Oscar had the lung condition which meant he could never come off the ventilator. That the lifeline we had been thrown the previous evening was likely to be incorrect. The pulmonary bands were working as they should. This meant we were out of options. We had to take our son off his ventilator one last time. We had to let him go. He did say though, that the MRI could still happen. We were given the choice to sedate Oscar again and take him to another part of the hospital for an MRI scan. This MRI would be to try to confirm that the pulmonary bands placed during Oscar’s surgery were in the correct place and working as they should, and that he had the lung condition. After the MRI had confirmed what we likely already knew, we would decide when to take Oscar off the ventilator. We would choose when to let him go. This was one decision I had never wanted to make. How could I look into my sons eyes, to see him so alive and to say, yes I want to put an end to that?
Due to Oscar’s frail condition, and that to have the MRI he would have to leave the PICU, it wasn’t without risks. We have videos of me holding Oscar early afternoon on the 24th. In the background you can hear the medical staff discussing all the emergency equipment and medication they needed to take with them. I never imagined they would need to use it. As they were sedating Oscar for the MRI, things changed very quickly. I was standing beside him as they changed him to a portable monitor. The numbers started changing and alarms went off. I wasn’t worried. This happened before when he moved bay and it was due to the portable monitor being used before for an older child whose readings were supposed to have different limits for blood pressure, oxygen and heart rate. So, alert alarms would sound, and it was just because they hadn’t yet adjusted the settings for Oscar yet.
Only this time it wasn’t. His blood pressure really was dropping and he really was struggling. His body could not cope with the sedation he was being given. His bed was quickly surrounded by doctors and nurses who tried to stabilise him, and I was moved back to sit in a chair at the edge of the cubical. They were pumping Oscar full of medications, and fluids and trying to stabilise him. The longer this continued, the more it became clear that they were struggling. He wasn’t responding to the medications. He wasn’t improving. He wasn’t going to come back from this.
We asked them to stop. We knew this was it. Oscar was telling us he’d had enough. Our amazing brave baby boy had taken the decision I couldn’t bear to make away from us. He had chosen the time he wanted to go. He had made what I imagined would be an impossible decision, easy.
And what was I then given the chance to do? To hold my baby. The nurses placed Oscar in my arms and remove all the tubes and wires (except his pain relief.) Then they took away his ventilator. I held Oscar as he took his last breaths. Different day, different time, different place and many amazing memories later, but Oscar’s life ended just as I intended; peacefully and in my arms. I got my one wish.
There was no doctor stating “time of death” as on TV shows. I know it was somewhere around 3pm, but the exact time doesn’t matter. It would be recorded on his medical records and would be easy for us to find out, but it isn’t something that I actually need to know. A specific time wasn’t important.
After he had gone we moved into a private room, ironically the same one where we had discussed our options with the doctor hours before, and we got to spend some time with Oscar. We washed and changed him and we dressed him. We dressed him in the Tigger outfit that he had never had the chance to wear. I’ve now realised this was especially fitting since his Tigger was the friend picked to stay with him during his MRI and was right beside him when all medical staff were working on him and we had to be moved away from him. We also put a pair of his socks on him, which I remember apologising to him for because the colour of them clashed with his Tigger suit!
We then held him and a nurse took some last family photos for us. We were then left alone with Oscar. We took a few photos of our own, which are some of my favourites, but would never be right to share here. This is part of one though:
We had a set of footprints taken. The nurse also tried to do a hand print, but it didn’t come out properly due to Oscar hand. She offered to redo it, but we said no. If Oscar had any say, I can imagine that was exactly the way he would have wanted it.
We also had some of the nurses who had cared for him come in to see him. We spent a few beautiful hours with our baby saying goodbye and trying to make a few final memories. And then, when we felt it was the right time to let him go, the amazing nurses let me carry Oscar through the hospital to the mortuary in my arms so that he didn’t have to leave his home in a body bag. Since Oscar had been admitted to the PICU, I had held him often, but I’d always had to be sitting in a chair right next to his bed due to the tubes and wires. Taking him for a walk was something I always wanted to do. The fact that he had gone, and where that walk was leading weren’t important, I was just glad I had finally been able to walk with Oscar in my arms.
I can’t believe that day was a year ago now, that somehow I’ve managed to survive a whole year since my heart was completely broken. I remember everything so vividly, and despite it being the worst thing that has ever happened in my life, I am so grateful for the memories. I can’t ever wish them away, I can live with the pain. What I could never survive was to forget Oscar’s life.
I took a final photo of Oscar alive once the ventilator had been removed, but honestly that is the one photo I find it really hard to look at. It does confirm though, that we made the right choice. You can’t see Oscar in that photo at all, he had gone.
What I will share is what I consider Oscar’s final photos, taken earlier on the morning of April 24th: Oscar looks to me like he is puzzled in that last photo, or maybe that he is asking “Why?” I wish I could answer that one, Oscar.
I didn’t take nearly enough photos on Oscar’s final day. Had we known what was going to happen, I would have taken many more. I wish I’d taken more photos in those final moments. I wish I’d thought to ask someone else to take a photo when I was holding Oscar that final time.
In 2015 I said I didn’t like that one final picture I had taken, it’s not one I ever shared. I’ve edited it a little and I’d like to share it now:
Getting over the death of a child is something I think never actually happens. Yes, you can move forward and yes, you can find ways to cope; but you never get over it. There are still days that it hurts so much that Oscar isn’t here. Days when I think the world is so unfair. But, I survive them, time doesn’t stand still and eventually those moments pass and when they do, I can remember the good moments. The moments when I’m able to focus on the positive, the many happy memories of Oscar that I have.
Oscar only lived for 23 days, but for all of those days he was my sole focus. When he died, I was completely lost. How was I supposed to go on without him? Did I actually want to? Three years on, I’ve realised that want to or not, I don’t have a choice.
So, three years to the day that Oscar died, I’ll go to work, I’ll smile and I’ll do my job. Because, I don’t have a choice. Because the world will always go on without Oscar, and as much as I miss him and love him, I can’t change that he is gone. All I can do is tell his story in that hope that his memory can continue.
Yesterday, I was listening to my iPod and a few lyrics from one song seemed particularly appropriate:
“What would you do if you had more time? The Lord, in his kindness, He gives me what you always wanted, He gives me more time.”
“You could have done so much more if you’d only had time, And when my time is up, have I done enough? Will they tell our story? Will they tell your story?”
The lyrics are from a musical, and the story isn’t remotely comparable with Oscar’s, it’s just those few lyrics that work, and also these from a different song:
“There are moments that the words don’t reach, There is suffering too terrible to name. You hold your child as tight as you can, And push away the unimaginable.”
Those lyrics describe the final moments I held Oscar when he was alive very well. There is nothing that can ever prepare you for the feeling of holding your dying child. Of knowing that while you can feel them warm and breathing cuddled in your arms, that it won’t last. That they will just be allowed to slip away. When I was holding Oscar that final time, I don’t really remember saying anything to him. I don’t think there was anything I could have said. It wasn’t going to be ok. So, I just held him and that was enough. That was all he needed.