Treating the kids - Meeting Corbin

On the morning of Sunday 15 May 2005 I turned up at East Surrey Hospital. I was there to collect my beautiful wife, Tara, and my first child – Corbin. I had watched him being brought into this world only the previous evening. All night texts had been going out to friends and family: “Baby boy, seven pounds three ounces, mother and baby healthy.”

When I arrived that Sunday morning, Tara told me that the doctor had examined our son just before discharging them both. He had noticed a very slight flickering of Corbin’s fingers – so he would need to go to the Special Care Baby Unit for tests and observation.

Two sleepless nights later, MRI scans revealed that Corbin’s brain had not developed correctly in the womb. He was diagnosed with cortical dysplasia [a birth defect where brain cells do not take the proper formation]. He also had polymicrogyria abnormalities [a developmental malformation affecting the folds of the brain’s surface]. These problems were causing epileptic seizures. It was also revealed that Corbin had paralysis down his left side (known as hemiplegia).

After 10 days, we were allowed to take Corbin home and our whole new life began. It was a life of phenobarbital, topirimate, Keppra, oxcarbazepine and – most importantly – midazolam. My paternity leave was over, so I had to return to work in Northampton. I left the rest of the family in London, but Corbin’s seizures were increasing in severity. Tara relied heavily on the support of Corbin’s half-sister, Siobhan, and his grandparents. I was leaving work early virtually every day. After three months I had to give up work altogether. It became clear that Corbin needed 24-hour supervision.

When Corbin was four months old, we were invited to Great Ormond Street Hospital to investigate the possibility of brain surgery. The idea was to disconnect the right-hand side of his brain in an effort to control his seizures. They were having a hugely negative effect on his mental development. After many tests, we had one final meeting with the brain surgeon. To our surprise, he recommended that we hold off on surgery until Corbin became older and stronger.

Tara and I have always had vastly different outlooks on life. Mine is naively over-positive, while hers – in my overly positive opinion – is unduly negative. I have never had any real problems coping emotionally with Corbin’s epilepsy. I think this is down to the fact that he is my only child – I had no preconceptions about parenthood. But Tara has a healthy daughter from a previous relationship – so I know she was expecting a similar experience the second time around. Tara’s first reaction to Corbin’s diagnosis was complete disbelief – followed by a fleeting desire to walk away. We are all rather glad she changed her mind!

As the first year of Corbin’s life passed, I began to put on a lot of weight. I became increasingly prone to blinding headaches, excessive sweating and tiredness. But what else could I expect given the amount of food I was eating and a lack of exercise?

Tara’s constant nagging finally forced me to have a check-up. An MRI scan found a golf-ball-sized tumour on my pituitary gland. So a year after Corbin’s birth I found myself in the neurological hospital right next to Great Ormond Street – having an operation to save my life.

Thank heavens for Tara’s negativity.