Surgery leads to normal life
Like most kids, 6-year-old John Lawson Florer loves to swim and play computer games.
Unlike most kids, John Lawson has only half of a functioning brain.
That's because when he was 17 months old, surgeons at Children's Medical Center in Dallas cut the connection between the left and right hemispheres of his brain. The goal was to stop the 60 to 70 epileptic seizures John Lawson was having every day.
‘Big, white hole where his brain should have been.'
John Lawson, who goes by his first and middle name because his dad's name is also John, wasn't as active as his big brother, Will, had been as an infant. Their parents noticed other subtle differences between their boys.
"At 7 months, John Lawson began this eye-rolling thing, and I thought, Is that typical?" said his mom, Gini Florer.
At 9 months, John Lawson still couldn't sit up. He would topple over from a sitting position.
An MRI scan shows that nearly half of the brain is a fluid-filled void.
The Florers brought their son to Children's, where doctors in the epilepsy center took recordings of the electrical activity in the baby's brain. It showed seizure activity. "That wasn't the day, though," Gini said. "The day was seeing the big MRI up on the screen.
"There was a big, white hole where his brain should have been."
Doctors discovered that John Lawson suffered a stroke before he was born, leaving 65 percent of the left side of his brain unformed. The portion of the left side that remained was causing seizures. And the seizures were preventing John Lawson from developing as he should.
"It was a surreal day," Gini said. "As your day changes, everybody else's day is normal."
But she saw to it that Will, who was celebrating his preschool graduation, had a normal day.
"We had a swimming party that afternoon. And I was determined that he was going to that party," she said. "We had to keep going at somewhat of a normal pace for him. Everything couldn't stop for John Lawson."
Rebooting after every seizure
The Florers spent the next few months trying different medications to control John Lawson's seizures, which were getting harder for the family to watch. "His right arm would shoot out to the side of his body and his head would bob to the right," Gini said. "It was heartbreaking because you knew something was going on inside his brain that was bad. It was like he was rebooting in his head after every seizure."
Surgery ‘right thing to do.'
After eight months of little progress, the Florers made a life-changing decision. They allowed surgeons to disconnect the right and left hemispheres of their son's brain. The nonfunctioning left portion of his brain remains inside his head. The goal of the surgery, called a hemispherotomy, was to stop the seizures without increasing the weakness on his right side, caused by the epilepsy.
The risks were significant. The Florer's little boy might not walk or talk after surgery. He might not have fine motor skills on his right side. There was also the risk of infection and of fluid building up in his brain.
Despite the risks, surgery was an easy decision for the Florers after what they had watched over the past few months with John Lawson's seizures and medications that weren't making a difference. "It seems like a hard decision, but it became clear that it was the right thing to do."
Right side of the brain takes over for the left
Today, John Lawson is doing well. He's on medication and has had only three complications, which the Florer family doesn't characterize as seizures. He's a first-grader at Hyer Elementary in Highland Park and loves going to school.
Twice a year he comes to Children's to see Dr. Susan Arnold, his neurologist. She checks John Lawson's physical and mental development and his medications.
Because John Lawson was so young at the time of his stroke and surgery, his brain was still developing. Language and motor skills were not fixed in the left side, and could move to the healthy right side of the brain. Dr Arnold explained: "The seizures were preventing this relocation of function. After surgery, he was able to learn to walk and talk using the right side of the brain."
John Lawson began walking just before his third birthday. After he turned 4, he began talking. "He talks. He talks a lot," Gini said. "The ability to communicate makes his life less frustrating and ours, too. He's very verbal, but it's not a conversation, yet."
The family's strong faith in God has been an important support for them to lean on. "John Lawson is under His care and that helps put things in perspective," Gini said.
He also has supportive siblings, especially Will. "He was very aware at a young age. He developed compassion at a young age because of what John Lawson was going through," Gini said.
"John Lawson doesn't know that he's different; he's just happy."
Pre- and Perinatal Strokes
Strokes like the one affecting John Lawson, which occur before or around the time of birth and affect a single, large area of the brain, occur in about one in every 5,000 babies. Sometimes the problem is obvious right away, but more than one third of cases aren't recognized until a baby grows older and begins to reach for toys. Dr. Susan Arnold, John Lawson's neurologist, said that any baby younger than 1 year who only uses one hand to reach for things should be evaluated for a possible stroke. In John Lawson's case, the stroke not only caused weakness on his right side, it also caused the frequent seizures.