‘My son’s brain was split in two to try to cure his epilepsy’
EARLIER this year, Sharon Thomas was faced with a decision that no parent should ever need to make.
She was told her teenage son Jacob Green, who was born with epilepsy, was now suffering such severe seizures they were causing accumulative and lasting damage to his brain.
As his medication was no longer working, doctors said the only option left was to carry out a complex operation called a hemispherectomy where the left side of his brain would be disconnected from the right.
While the treatment was highly effective in curing epilepsy, it ran the risk of him suffering permanent paralysis and losing the ability to walk, talk and even swallow.
Sharon, from Ton Pentre, Rhondda, said there was no way of knowing how bad the damage would be until after the surgery had been carried out.
“It was the hardest decision of my life, absolutely terrible,” she said. “It was horrific to be faced with that kind of dilemma.”
Jacob was diagnosed with epilepsy a few hours after he was born via emergency C-section. He spent his first few weeks in a neonatal intensive care unit at a hospital in Lincolnshire while the clinical team worked to bring his condition under control.
Thankfully, with the right balance of medication they were successful and Jacob was soon stable enough to go home to lead a normal life. That’s how it stayed until at the age of seven he suffered a massive seizure on Boxing Day.
Jacob was taken to Glangwili Hospital in Carmarthen for investigation.
Confident it was just a one-off, he was discharged the following day only to have another devastating seizure two days later. He was then put under the care of staff at the Noah’s Ark Children’s Hospital for Wales in Cardiff.
Jacob underwent countless tests and his clinical team pursued various avenues of treatment but nothing worked.
By this point he was taking five types of medication and, concerned the seizures were starting to have lasting damage on his brain, he was referred to Great Ormond Street Hospital in London.
“Scans to monitor the effect of the seizures on Jacob’s brain had revealed irreversible damage was being made to his brain,” Sharon said.
She was told that without drastic surgical intervention, the seizures would erode her son’s brain permanently, resulting in serious cognitive impairment.
It was an agonising decision for Sharon, made even more acute because of the restricted window of time in which the procedure could be performed.
Eventually, faced with the certainty that epilepsy would eventually rob her son of a future, she opted for the surgery.
Jacob walked into the operating theatre on July 8 chatting to his nurses and came out unable to sit or really speak.
“He had lost the use of his right arm, leg, and the right side of his face. He basically looked like a stroke victim and my first thought was: ‘What have I done?,’” Sharon admitted.
“I did regret it at that point but I was told that, over time, things would start to improve as the brain rewired itself. Jacob’s rehab team were very clear that our goals needed to be small and realistic ones.
“We made our way back to the Noah’s Ark Children’s Hospital for Wales for a 12-week course of rehab, setting ourselves the ultimate target that, at the end of it, Jacob would have gained enough independence to walk to the toilet on his own.
“But thanks to Jacob’s determination and the dedication of the team at Noah’s Ark, he achieved so much more.”
With the help of the hydrotherapy pool and the specialised exercise bikes, 15-year-old Jacob built up his strength. Through sheer determination, he started to walk and went much further than the distance they had set as a goal.
After four months Jacob was well enough to leave hospital in early September on his own two feet.
Sharon, who said Jacob is now having regular occupational therapy and physiotherapy, added: “I could never repay the team at Cardiff.
“I agonised so much at first about my decision to go ahead with the surgery and it was so painful to see how much Jacob struggled at first. But the whole team here have worked miracles.”
The Noah’s Ark Charity has launched its Christmas appeal Here for You to fund an emotional support service for children and families at the hospital.
■ For more details, visit www.noahsarkcharity.org/hereforyouappeal