Haydn Boxall is the youngest ever patient to undergo brain surgery for epilepsy at Southampton General Hospital.
At just 14 months old, he went through a life-changing operation, having suffered up to 85 epileptic seizures every day.
Haydn, who lives with his mum, Gaynor, and dad, Marcus, on the Isle of Wight, is now two years old. He has been seizure free since his operation.
It was Marcus who spotted that there was something wrong when Haydn was only four months old. His eyes twitched and he dropped his head, then did it again a couple of hours later. The couple called their GP, but the next morning had to get an ambulance after Haydn had seizures for two hours.
After four days of observation and tests at St Mary’s Hospital on the Isle of Wight, Haydn went home, but within a week the seizures started again and he was transferred to Southampton General Hospital.
He was suffering with difficult to control focal, or partial, seizures. At his worst, these seizures would go on all day, lasting about four minutes each, with about four minutes between them.
For the first year of his life, doctors tried various medications and even induced a coma at one point to try and help his body recover.
The family commuted between their home and Southampton while Haydn was assessed and treated. After spending Christmas 2006 at the General, Haydn had two seizure free months when they were able to go home.
Gaynor said: “Just before his first birthday, in April 2007, he started having one or two seizures a week, but we had medication for him and were able to manage it at home. He was well enough for us to celebrate his first birthday and have a party, but by May he was having 30 to 35 seizures each day again and we went back to Southampton with him.”
They had discussed surgery with doctors, but it was not something they thought would be done while Haydn was so young. However, with high doses of medication not helping, it became their only choice.
“Although we had a choice, we knew surgery was his only chance,” said Marcus. “Prof Gray was very honest with us about how serious Haydn’s condition was. We had suspected it, but it was still hard to hear. Prof Gray, Dr Kirkham and the rest of the team were all amazing though, and we decided to go ahead with the surgery.”
There were two stages to Haydn’s operation. The first involved attaching 48 electrodes to his brain and monitoring him in the telemetry suite, to find out exactly where the seizures were coming from. The second stage involved removing a large part of the left side his brain that was causing the problem, including the area that controls movement of his right hand.
Professor Liam Gray said: "Haydn was one of the most challenging, yet also one of the most rewarding, patients we have treated on the epilepsy surgery programme. Removing the lesion causing his seizures was certain to make his right arm weak - but offered the only chance of his becoming seizure free. Everyone is delighted with how well he has done. He is completely seizure free and has even regained some useful movement in his right arm. His parents made a very difficult and brave decision - but it was the right one!"
Haydn is now doing well and has impressed his physiotherapists. His right side is a little weak and he probably won’t develop the fine motor skills in his right hand, but he is seizure free and learning to crawl and talk.
This story originally featured in Connect magazine.
Read more news and patient stories in the latest edition of Connect.