Treating the kids - Ten months on

Ten months ago, my son Corbin had a major operation at Great Ormond Street Hospital. The procedure would totally disconnect one side of his brain in the hope that it would significantly reduce the number of seizures he was having. These seizures had already caused massive delays in Corbin’s development. Only a daily cocktail of epilepsy drugs were keeping them in any kind of check. So – for me and my wife, Tara – the decision to go ahead with the operation was a simple one.

It is some time since I started to write this account of the build-up and aftermath of the operation. I did it in the hope that it might help any parents who are in a similar position. I hoped that reading my experience would help make up their minds, if they weren’t so sure of the right choice to make for their child. When I started I didn’t know if the operation would be a success. In fact, I didn’t even know what outcome would qualify as a success. I have tried to lay down the facts and let the information speak for itself.

Immediately before his surgery, Corbin was experiencing up to 20 seizures a day, causing unknown damage. Ten months on, this constant flow of seizures has been reduced to a trickle. Admittedly, he remains on the same dosage of epilepsy drugs that he was on. However, the feeling is that, come February, he will be weaned off them gradually – leaving him drug-free. He has regained full use of his left side. Even though he doesn’t use his left arm much, it is because he feels he doesn’t need to, rather than because he is unable to.

We are in no doubt that this operation has improved the quality of Corbin’s life (as well as ours) in so many ways. Looking into Corbin’s now-clear eyes, it is obvious that the seizures were causing him so much distress. In hindsight, it’s also clear how much they were holding him back from developing mentally.

He continues to have some seizures and is only a small way through a long and exhaustive physiotherapy programme. Still, he now seems to have a chance of future progression. The majority of his behavioural problems are similar to those of my friends’ ‘normal’ children.

It seems appropriate that I am writing this last instalment at three o’clock in the morning while Corbin plays in the other room. Apparently he decided that three all-night sleeps in a row is quite enough, thank you very much. To put this into perspective, I don’t think he ever had three nights’ sleep in a row before his surgery – so he is forgiven!

I do hope that Corbin’s story has been of interest. However, my real wish is that it may help a child’s parents make a decision that may have a dramatic impact on the whole family’s future. If anyone would like to contact me to ask any specific questions, please do so! Email me at ruttcorbin@hotmail.co.uk