Isaac now seizure-free thanks to complex epilepsy surgery | News

Isaac, from Wellington, Shropshire, has been seizure-free for five months, thanks to a complex nine-hour surgery carried out by our Children’s Hospital expert team.  

Now aged seven, he was diagnosed with cerebral palsy when he was six-months-old and was also diagnosed with focal epilepsy shortly after his second birthday. Isaac has had seizures most of his life.

His mum, Natalie, recalled when he was first diagnosed. She said: “We’d had no experience of epilepsy before and we didn’t know surgery would ever be an option. 

“He started having focal seizures every few days when he was about two-years-old and his left arm would convulse, and he’d go very distant for a few minutes. 

“He’d also have the bigger tonic-clonic seizures every six months and with those he’d be on the floor and his whole body would convulse. His eyes would roll back and he’d be foaming at the mouth.” 

Isaac was put on medication to try to control his seizures, but they were getting bigger and more frequent. 

He was referred to our Children’s Epilepsy Surgery Service (CESS), where he had a video telemetry — a test that uses cameras, microphones and electroencephalogram (EEG) to capture and record the seizure activity. Unfortunately, it showed Isaac’s seizure activity had got worse. 

He was put forward for a surgery called hemispherotomy, a complex procedure that disconnects the abnormal right half of the brain from the normal left half, and the rest of the body. This will stop the spread of the seizure activity and can massively reduce or stop epileptic seizures.

Natalie said: “He’d started having drop seizures, where he’d just suddenly drop to the floor and he had to wear a helmet to stop him hitting and hurting his head. He was having the bigger tonic-clonic seizures every few weeks now. 

“It took us three months to decide to have the surgery. It was the hardest decision we’ve ever had to make. 

“We tried to be optimistic, but the scope of recovery was so big and there was no guarantee of the outcome. We just didn't know what to do, but when the seizures started getting worse, we knew if there was a chance the surgery could improve things, we had to do it.” 

Isaac was to have a hemispherotomy in March. 

Natalie recalled the day: “Before he went into theatre, I remember thinking ‘this could be the last time I see my boy’, so me and his dad sat with him and then his dad carried him into theatre. 

“Walking out of the hospital and knowing there’s absolutely nothing we can do was the worst part. 

“I’ve been there with him for everything, but this was the one time I couldn’t be and we had to put our complete trust in the hands of strangers.” 

Isaac was in surgery for nine hours and the procedure went very well. He spent two weeks with us while he recovered, where he worked with our Physio team to build the strength back in his left side, so he was able to walk on his own again. 

Natalie commented: “When we saw him in the recovery room, that was the only time I’ve seen him cry in this whole process – he was an absolute trooper. 

“It was about three or four days before he started acting like himself again, but it was like a switch suddenly flicked. He put an empty bedpan on his head and was laughing and we thought ‘there’s the Isaac we know.’” 

Since the surgery, Isaac has been seizure free, has returned to school and is thriving.  

Natalie said: “It’s almost like it never happened, he’s so much more happy and confident than he ever was before. 

“He's back at school and playing football outside with his friends like any other seven-year-old boy. It’s been amazing to see him fully involve himself in these things without worrying about having a seizure.  

“It’s not just changed Isaac’s life too. It’s had such an impact on our whole family. We don’t need to worry as much about if he had a seizure now.” 

Mr William Lo, Consultant Paediatric Neurosurgeon at our Children’s Hospital, was one of the surgeons who helped Isaac. 

He said: “The Epilepsy Surgery team are very happy that Isaac is doing so well after the surgery. 

“Isaac, Natalie and Sam are nothing but brave. Intractable epilepsy does not just affect a child but the whole family. We are privileged to be able to help Isaac’s family and others. 

“Our Children’s Hospital is one of four nationally commissioned centres that provides the Children’s Epilepsy Surgery Service (CESS). Every year, we perform between 50 and 80 epilepsy operations, including extensive disconnection surgery like Isaac’s." 

Natalie and Sam wanted to thank all the staff who helped look after Isaac and the family have also raised money for our Charity. 

She added: “We don’t have words to describe how grateful we are. It’s thanks to everyone’s hard work and dedication that Isaac can experience a seizure free childhood, and hopefully life.”