CHICAGO (WGN) — Disconnecting half the brain to stop seizures sounds unthinkable, but it’s an actual procedure to help children with a rare form of epilepsy.
RJ Walters is one of those kids. He is 8 years old and loves to play basketball.
“April 2019, when he was 4 years old, is when he had his first generalized seizure,” said his mother, Jamilah Doyle-Walters.
And they kept coming.
“With focal seizures, you see a kid (and) they are just staring off into space, and you think they are daydreaming,” said his father, Randall Walters Sr. “And they are still able to respond to you. I wanted to be that dad, the sports dad, ‘let’s go climb a tree’ dad. And that was all taken away.”
The atrophy in RJ’s right brain led to a diagnosis of Rasmussen’s encephalitis, a rare and progressive neurologic condition.
“The right side of the brain doesn’t quite look like the left side of the brain,” said Dr. Sandi Lam, a neurosurgeon at Lurie Children’s Hospital in Chicago. “There’s less brain matter on the right side than the left side.”
“The seizures were coming from one side of his brain,” Lam continued.
“I knew whatever damage was done was done. I didn’t want him to experience anything further than that,” RJ’s mother said.
To prevent the disease from robbing RJ of any further function, Lam offered what’s called a hemispherectomy.
“Really the goal of the surgery is disconnecting the bad side from the good side,” she said. “So seizures from the bad side of the brain do not get through to the good side.”
In other words, an entire half of a patient’s brain is disconnected at four specific points to stop a seizure in its tracks.
Lam is one of only a few surgeons to use a less-invasive endoscopic approach. Instead of a large incision, a smaller entry hole is made in the skull to accommodate her instruments.
“It sounds disturbing that you can cut off one whole side of the brain from the other side and expect a good outcome,” she said. “In a child, because they are still learning and developing, the good side of the brain can learn to take over some of that function. So that is why in this type of surgery, the earlier the better.”
“Once I had that conversation with Dr. Lam and she reassured me and I read her research, I was game on,” Doyle-Walters said. “And it didn’t take much convincing after that to give him the best possible life I could possibly give him.”
RJ underwent the procedure in December 2020.
“By her making sure we were aware that his growth and potential would still be better than it would be if he didn’t have the surgery, it made it a lot easier to accept and go for it,” said RJ’s father.
RJ has been seizure free since then.
The third grader does have some challenges, including weakness along the left side of his body.
“He had to learn how to read all over again as well as count math,” Doyle-Walters said. “So he definitely struggles.”
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However, RJ is not backing down.
“He’s amazing. He’s in taekwondo. He just earned his yellow belt,” Doyle-Walters said.
RJ also participates in Special Olympics.
“I try my best to let him understand that you can do everything everybody else can do. It just may take you a little longer, and that is ok,” Doyle-Walters said.
“I got my son back. Just to see his growth and development and where he’s come from to where he is now is remarkable to me,” Walters said. “And I tell everyone in the world that’s the strongest person I know and he’s only an 8-year-old boy.”
The surgery is not effective in adults since only a child’s developing brain can compensate for the loss of an entire hemisphere.