Losing Hope - Day 47 of Sam in Paediatric Critical Care

Location: Paediatric Critical Care Unit - QMC Nottingham

Date: 7 May 2021

Day: 47

Sam: 5 years old - previously healthy

A Mother's FIRES Diary

This is day 47 of my five year old son being in a coma, as doctors fight to stop his relentless seizures. They came out of nowhere after what appeared to be a mild virus. They have named this FIRES (Febrile Infection Related Epilepsy Syndrome)

⚠️Please note: this content may be distressing to read ⚠️

Yesterday's diary recap (Day 46)- We shared that we had made the devastating decision, together with Sam’s consultants, to remove his breathing tube on Monday — four days later — as we had learned that there was no possibility of Sam ever having any meaningful chance of recovery due to the catastrophic and irreversible damage to his brain.

Day 47 - I woke in the early hours of the morning, overcome with the thought - what if Sam was in pain or in distress, and couldn’t tell us? What if, in his coma, he was trying to send us a message: "Please stop fighting, Mummy and Daddy. You’ve done everything you can - it’s now time to let me go."

I had this overwhelming feeling that if we were going to remove Sam’s life support, we shouldn't delay. To delay would be for us, not for him, and that was not right to Sam. I was utterly terrified and beside myself to think that Sam may be trapped in a body that couldn’t communicate, experiencing pain and fear, was terrified and unable to let us know.

I spoke to Sam’s dad as soon as I could - that I felt we should bring the date forward - he agreed. We both knew we had to put our own heartbreak aside and do what was right for Sam. We loved him so deeply and unconditionally that, in our hearts, we knew we had to make this final act of love. A promise to let him go with peace and dignity.

As soon as I arrived on the ward, I spoke with Sam’s medical team. An urgent meeting was arranged with the neurologists, critical care consultants, our lead nurse, and the palliative care team. Throughout the meeting I was distraught and sobbing, but somehow found the words to explain how terrified I was that Sam might be conscious on some level, in distress, and needing us to listen, to see him, to let him go sooner rather than later.

The team were incredibly supportive - and they agreed. One of Sam’s neurologists thanked me for calling the meeting. They too had been reflecting the day before and felt the same. We all agreed Sam deserved to be allowed to pass peacefully, without suffering. Continuing with intensive interventions no longer felt right. Sam was suffering, and the MRI confirmed what we already feared - the damage to his brain was catastrophic and irreversible. On top of that, he was experiencing relentless, continuous seizures. There was no quality of life left for Sam what so ever.

All hope had gone.

FIRES had taken everything. It had stolen our little boy’s future, his laughter, his joy and all hope of recovery. At that point, critical care no longer felt like the right place for our brave boy. The care wasn’t benefiting Sam anymore, it was being done for our benefit - to keep him alive - as we didn't want to give up the fight. But in who's interest were we fighting for? It wasn't Sam's anymore - it was ours.

And we simply couldn’t put him through it.

Asking to bring forward the removal of Sam’s life support, the decision that would ultimately lead to his passing, is something that will haunt me for the rest of my life. It felt like a betrayal of my deepest vow: to never stop fighting for him, to never give up hope. But every day I try and hold onto the reason in some way that’s exactly what I was still doing - fighting for him by letting him go?

On the many days when doubt creeps in, when I question whether I failed Sam, I remind myself of what one of his consultants told us: “There are some things worse than death.” And Sam was facing that, a minimally conscious state, catastrophic brain damage, minimal awareness, no quality of life.

That was not the life Sam knew. Sam’s life was bikes and beaches, muddy puddles and LEGO, walks with Daisy, laughter and light. That was his life, and he would never want anything less.

The 7th May was filled with unbearable pain. After the meeting, calls were made to family and close friends. Quiet preparations were made for what now felt inevitable.

After the meeting with his team, I remember feeling completely numb. Not crying, not thinking, just surviving. My mind had shut down - to get my through the unthinkable. I still had to be there for Sam, just like always. Comforting him, washing him, moisturising his skin, reading to him, talking to him, watching over his vital signs. But throughout the day, Sam was clearly deteriorating. His seizures were constant, his vitals erratic, and he needed increasing levels of suctioning.

That night, Sam’s lead nurse, someone we respected and trusted deeply, was on shift. As the evening settled, she asked if I was staying. I immediately said yes and stayed by his side throughout the night, helping with his care. His nurse was simply phenomenal. She worked relentlessly all night caring for Sam - she literally didn't stop. He was becoming increasingly unstable. The seizures didn’t stop. Maybe it was something I needed to see. Maybe Sam was saying to me - see mummy - it is all too much. It is time to let me go. His body, in my opinion was becoming distressed - it was all too much.

At one point, he needed a heart trace as the doctors had noticed an issue in its rhythm. I ended up trying to help the doctor place the electrodes on his little chest as they wouldn’t stick, probably because of all the moisturiser I’d applied.

In the early hours, the registrar came and sat beside me on the floor. They gently explained they were going to adjust his medications, bring some forwards, to make sure Sam was as comfortable as possible. I will never ever forget his compassion and care for Sam and me at the worst time of my life.

And then morning came - the 8th May 2021.

💥WHY WE ARE SHARING THESE DIARIES💥

There is currently no cure for NORSE and FIRES, no consistently effective treatment, and the cause is still not fully understood. Around one in five people do not survive the acute stage. While recovery is possible, many survivors are left with significant lifelong neurological disability, chronic epilepsy, and complex care needs.

Five year old Sam was a healthy, happy and loving little boy from Derby in the UK. He was rarely ill. Just after his fifth birthday, on 22 March 2021 at 8pm, the fight of our lives began when Sam had his first ever seizure after what appeared to be a routine viral illness, and our world changed forever.

With love and thanks,

Sam's mama bear 🩷