Toddler plagued by rare seizure disorder: West syndrome

WHEN Joanne Hardisty's three-year-old son Jack started having more than 30 seizures a day, she had to take action. But the 25 year old from Scunthorpe, Lincs, was facing a terrifying choice...

WHEN the doctors first told me their plan, part of me thought that they must be joking. They couldn't seriously want to remove half of my toddler's brain, could they?

But it was far from a laughing matter and they insisted that it was the only way to stop Jack having more than 30 epileptic fits every day. Even so, could I really let them do something so drastic?
I know that every mum would do anything to help their child but even if Jack survived the procedure, it would change the whole shape of his life and prevent him doing things that many others took for granted.

Even though he'd been plagued by health problems during his short life, Jack was such a blessing. I'd cherished him ever since he rather reluctantly came into the world...

I'd become pregnant in June 2002, a year after meeting my partner Daniel Hitching, 26. We'd moved in together quickly and hadn't really thought about having a family. So the news of my pregnancy was a surprise but, once we got over it, we both began looking forward to becoming parents. Everything seemed fine at my scans and we were told that Jack was developing well.
As the months passed, we became increasingly excited. But Jack's arrival wasn't straightforward...

I was induced and went into labour in February 2003, two weeks after my due date. But as the hours passed, the doctors told me that the baby kept falling asleep in my womb - Jack may have been in no hurry to come out but the doctors had other ideas.

"We need to perform an emergency caesarean and get him out," they warned. So I was rushed into surgery and Jack arrived soon afterwards, weighing a healthy 7Ib 1oz. Everything seemed fine until a few days later, when we'd taken our tot home.

I noticed that occasionally his body would jerk and he'd throw his arms over his head. It was as if he'd heard a sudden noise that made him jump.

This was soon happening up to 10 times a day and my doctor diagnosed colic.

Then it got worse. As he threw his arms back, his eyes would roll back in his head, too.

I repeatedly visited my GP, who stuck by the original diagnosis. I accepted that but my fears grew when Jack was a few months old and, as I cuddled him one afternoon, his whole body began twitching.

My mum Susan, who is a nurse, came round to babysit and I told her what had happened. "I think he may have had a fit," I said worriedly.

She reassured me and promised to keep an close eye on him. So I went out, fearing that it I was cracking up and had just imagined things.

But a few minutes later, Mum phoned. "He's just had another one," she said.

So we drove Jack to Doncaster Royal Infirmary, where he was put under observation. When he twitched again, I told the doctor it was colic. "No," he said, "it's something much more serious."
Jack was transferred to Sheffield Hallamshire Hospital for a scan on his brain. Once that was done we went back to Doncaster, to wait anxiously for the results.

Daniel and I paced up and down for hours, wondering what was wrong with our little boy.

At midnight, we finally got the answer. Jack had West syndrome - a rare type of infantile epilepsy causing abnormal electrical currents in his brain and sparking the fits, which can slow or halt childhood development.

The doctors told me it was something that had happened while Jack was growing inside me and was probably why he'd fallen asleep in the womb as doctors tried to deliver him. I couldn't believe it.

Daniel and I were devastated. We were told that Jack would need lots of medication to reduce the number of seizures.

We tried everything we could but nothing worked... until he was seven months old.

At that stage, Jack suddenly improved. The fits stopped and, over the next three weeks, he learned to sit up by himself for the first time. We were thrilled. But then, just as suddenly, the fits returned. This time, they affected his memory, too, and Jack forgot how to sit up.

Cruelly, we were right back at square one - and that's when doctors told us of their radical plan to remove half of his brain, in the hope that it would stop the fits. It was only the second time that the surgeon had tried the procedure but we had to admit that nothing else was working.

There was a high risk that Jack could be paralysed, have a stroke or even die during the surgery. It was an agonising decision but we knew that we really had no choice - it was the only way to stop the fits that were ruining his life.

My hands shook as I signed the consent form...

The four-hour operation was carried out in November and that four hours was the longest wait of our lives.

We were so relieved when the team told us that the surgery was a success and that they had removed the right side of Jack's brain.

It meant he lost all vision in his left eye. The right side of the brain also affects speech and memory of pictures. This side also deals with skills needed to, for example, dance, play the piano and swing a tennis racket.

So, Jack is never going to do any of those things. But, in the scheme of things, that's not important. It stopped the seizures and, for us and him, that's all that matters.

In all, Jack was in hospital for a week and now has a horseshoe scar on his scalp. He made a fantastic recovery and hasn't had any fits since. In fact, the procedure has helped him in so many unexpected ways.

He never used to laugh before but now, amazingly, he does. The first giggle came soon after he returned from hospital. Daniel and I couldn't believe it - it was a wonderful sound.

Jack has never spoken and isn't likely to, so hearing him laugh - and watching him sit up - means the world.

Our second son, Danny, was born in July 2004, weighing 6Ib 7oz.

I was terrified that he'd also be born with West syndrome so I watched him like a hawk. But luckily he is fine and the boys love being together.

We're busy fundraising now, so we can buy Jack a special bedroom with sensory lights to stimulate his development.

A couple of days before his operation, myself and six members of my family did a skydive and raised more than £2,000!

It's fantastic how Jack's quality of life has improved since his operation and incredible to think it took the removal of half his brain to make him better.