24/05/2026
May 24th.
Arriving on the ward we found Bea's condition appeared to be worse...it looked, to us, that she was dying.
Frantically seeking help, worry levels through the roof.
It turned out the canula providing the drugs to help her poorly heart, wrapped in thick dressings to prevent her from pulling at it, had snapped at some point during the night, the dressings preventing it being noticed.
The intensive care team were soon on hand and a decision was made for Bea to go to surgical theatre to have a Hickman line fitted and she was taken up to intensive care.
Bea was weak, very weak. There were concerns about how she would cope, but there was no other option, she needed a better way of getting medicines into her.
The thought that we would lose her was ever present. Hope was all that remained.
The wait for her turn in theatre was long. Wanting her to be helped as quickly as possible but also not wanting the moment of handing her over to arrive, very aware it may be the last time we saw her.
When it was time I carried her in, the sudden chill of the theatres from the warmth of the hospital corridors a shock. Laying her down and giving her a kiss as she was sent to sleep.
And you leave and you wait.
Oh boy, how you wait.
Every second stretches into what feels like hours, every clock (which you check constantly) seeming to be in reverse.
Every second a blend of hope, dread and fear.
It was late in the evening when the phone rang some hours later.
We can go and see her, "she's done well" they said.
The walk from Scott House back to the ward is a long one at the best of times. When you're desperate to see her your legs can't go fast enough, the corridor feels like it is stretching away from you, never ending.
We met a member of the theatre staff just outside of PICU. "She's just getting tidied up and you'll be able to see her" and we were led into the parents room inside the unit.
For those of who know PICU at Freeman Hospital, Bea was two beds down from the parents room. For those that don't know, thatt's probably less than 20ft from the parents room.
The door shut behind us and almost immediately we heard alarms.
People running.
Equipment being shouted for.
And we just knew it was Bea.
Cheryl asked me to look out, to check.
A crowd of medical staff were round her bed space working on her.
I don't know what I said to Cheryl or whether I said anything, my face probably said all that was needed.
Shortly afterwards the medical team came into the room. They'd brought Bea back with CPR.
The expectation was set that she may not make the night.
Her only hope now would be heart transplant.
She would go on the waiting list but would need a Berlin Heart to keep her alive whilst she waited.
I had no idea what a Berlin Heart was, I was hearing the consultant telling us the risks involved and I could see the paperwork in his hand. He was telling us about blood clots, strokes, infections...but all I heard was 'hope'.
I remember saying something like "I understand there are risks but what I hear is, there is a chance of saving her, so please, give me the paperwork and the pen"
It wasn't a choice.
Let her die or give her a glimmer of hope.
And so, in the early hours of the morning and for the second time that day, Bea was taken to theatre and our wait, of hope, of fear, began again.
