Roy with his mom Tina Barake. Picture: Ellen Smith Herald Sun
AN extraordinary operation to remove a huge section of a child’s brain has freed him from a rare and devastating condition.
The four-year-old boy, who was plagued by up to 80 spasms a day, has been cured.
Assoc Prof Andrew Kornberg, the Royal Children’s Hospital’s director of neurology, said he was so optimistic Roy Barake had experienced his last seizure that he discharged him.
The Melbourne boy suffered a type of epilepsy called infantile spasms.
“It’s rare, but it’s a devastating type of seizure disorder,” Prof Kornberg said.
Sufferers have a higher chance of developmental and neurological problems.
The seizures started when Roy was almost four months old.
“That was a big shock for a first-time parent. You expect your child to be fine and all of a sudden this happens,” Tina Barake said.
“It particularly affected my husband, Adrian. He was really saddened to see something take over Roy.”
Their little boy would go pale, his body would contort and he would be very upset after an episode.
“I felt helpless, I didn’t know what to do,”
Medication provided only temporary relief. Eventually, doctors found the part of Roy’s brain causing the seizures.
RCH director of neurosurgery Wirginia Maixner and children’s epilepsy program director Dr Simon Harvey cut away the left frontal lobe in a long operation.
His parents were told Roy could lose vital functions, but this was the best chance of a normal life.
Prof Kornberg described the outcome as exceptional. Tests revealed Roy’s brain functions have not been affected by the operation.
“We thought that our child might not even be able to say our name or sit up, we are really blessed to have this outcome,” Mrs Barake said.
Roy is just like any other boy his age, his parents say.
“He knows the words to all the AFL songs and he is looking forward to going to his first game with his dad,” Mrs Barake said.
“We are just thrilled. He’s also planning to start kindergarten next week.”
THE MIRACLE PROCEDURE
1. About one-third of Roy’s brain – half of his frontal lobe – was removed.
2. This area can be responsible for higher mental functions, personality, speech and movement, though other parts of Roy’s brain may have already taken over these functions
3. Surgeons and technologists avoided the motor pathways so movement on the right side of Roy’s body was not affected
4. Testing has revealed no damage to functions of the brain
5. Roy has had no seizures for more than 1.5 years
