Treating the kids - Life before surgery

It had been five years since the surgeon suggested delaying Corbin’s brain surgery until he was older and stronger. In the meantime, Corbin had been averaging 30 seizures a day, despite various drugs, resulting in a developmental age of around 17 months.

Our sleep pattern was non-existent. Every seizure would wake Corbin and, in turn, the rest of the family. Imagine how difficult it must have been for Corbin’s teenaged sister. Siobhan wasn’t allowed friends over, just in case they woke him. She would come home from school only to be immediately hushed as one of her parents was asleep.

Now, here we were at Great Ormond Street Hospital. Tara and I had been invited to discuss the possibility of brain surgery once again. The situation was so absurd it made us smile. We were ‘discussing’ our son’s treatment with one of the world’s most eminent brain surgeons. Forgive the pun, but – what a no-brainer. I think I nervously muttered: “Whatever you suggest, Wise One.”

All I really remember from that meeting were four wonderful words: ‘suitable candidate for surgery’. Of course, we knew the operation was definitely in Corbin’s best interests. Still, it was a big moment – signing the form that might lead to your son losing his life. Tara chickened out of this particular task and left the signature to me.

The operation would take place three months from our meeting. Three months with only one thing to do: wait. I was worried that the operation may be cancelled. Maybe we’d get snowed in. Maybe Corbin would get ill and would be too weak to be operated on. Maybe somehow there wouldn’t be a bed available. Oddly, I wasn’t nervous about the operation itself. I saw it as an opportunity for Corbin to be free from a lifetime of seizures.

It was during this period of waiting that I became a Grumpy Old Man. People would complain about their bad backs or their child’s tantrums. I would always think: get a real problem. Go to Great Ormond Street Hospital – you will find a family suffering greater hardship than you. I remember attending a routine appointment with Corbin in the eye department. I couldn’t believe the number of children with severe facial disfigurements. I sat in silence, almost certainly staring at the kids.

“Hello, my name’s Jimmy,” said a small blonde boy. He looked like any other child, aside from only having one eye. “Does he want to play with us?” he asked, pointing at Corbin. I realised that – whatever their problems – these children were just getting on with their lives.

Tara spent a lot of time trawling the internet. While I wanted to remain ignorant of the surgical procedure, Tara needed to know everything about it. She found families around the world with a child who’d had a similar operation. Their stories, on the whole, provided comfort to a very nervous mother. In the end, she was so well researched she could have scrubbed up and assisted in the operation!

Fortunately, the snow came early this year and we made it to the hospital fine. Although Corbin picked up a throat infection a week before his admission, the power of antibiotics came through. There was an overwhelming sense of relief when we arrived at the hospital as scheduled. One of the hardest parts for Tara and me – the tense wait for the operation – was over. Of course, the very hardest part was only just beginning for Corbin.