One boy’s story of triumph through physical hardships

By Sophie Pappas

Marching off the school bus at exactly 3:50 p.m., 8 year-old William Buttars smiles from ear to ear as he yells, “Bye!” to his bus driver.

“He is always happy,” said William’s mom, Tiernae Buttars. “Sometimes I think we all need to have half our brain turned off, then we would all be so happy.”

For William, functioning with only the left part of his brain is all he knows. At less than a year old, William underwent modern science’s most radical and controversial brain surgery: a hemispherectomy, otherwise known as the removal of an entire hemisphere of the brain.

“Someday we will have to explain to William why we did this to him,” Tiernae said. “That will be hard.”

The starting line

Completing her fourth healthy pregnancy, Tiernae delivered an eight-pound, pink-cheeked boy July 12, 2005.

It was not until her husband, Jeffrey Buttars, was bringing in the car seat to carry baby William home that Tiernae realized something was very wrong.

“He stopped breathing,” she said.

Postpartum nurses declared that William was having a seizure and needed to be rushed to the neonatal intensive care unit immediately. Once there, doctors discovered that William’s brain had been suffering minor seizures, called infantile spasms, every 12 seconds.

“There’s so much that’s difficult with the brain,” Tiernae said. “With heart defects doctors know so much, but there’s a lot unknown about the brain.”

Discharged and sent home with several seizure medications, it was not until William was two months old that an MRI scan showed the right side of his brain was much smaller in many places when compared to the left side. Doctors were baffled by William’s case, suggesting that perhaps his brain didn’t fully grow in utero or that the umbilical cord had wrapped around his neck sometime during Tiernae’s pregnancy.

“He’s not missing any chromosomes and we knew this wasn’t genetic,” Tiernae said. “So he was pretty much the poster child for the hemi surgery.”

The decision to consider a controversial brain surgery would soon lead the Buttars family away from their home in Washington state to southern California, where William’s path to recovery would begin.

Heading south

Fate and the recommendation from friends led Tiernae to the Mattel Children’s Hospital of University of California, Los Angeles. It was here that she met Dr. Gary Mathern, a professor of pediatric neurosurgery.

Mathern said William’s life would be on hold until his seizures were stopped, calling his multiple seizures a “hijacking” of the brain.

“If you’re having 30 or 40 seizures a day like William was, there never is a stage where you’re brain has the opportunity to function normally,” Mathern said. “If he doesn’t get the seizures stopped he’s heading to an IQ score of less than 50.”

Matherns said that an IQ of 50 would mean William would never recognize his parents, never be able to eat with a fork or spoon, and would never function normally. His only solution would be the hemispherectomy.

“We take out the bad part of his brain, which is half of the brain,” Mathern said.

And although Mathern told the Buttars family there was a chance William wouldn’t survive the surgery, Tiernae said there was no other choice.

“We had to give him the chance to live,” she said. “Even though many parents in our situation choose not to do the hemi.”

A running start

At 11-and-a-half months old, William had the removal of half his brain and soon became the poster child for recovery. His seizures stopped and by age three he was walking and developing with the help of physical therapists and a team of doctors.

“Since the surgery, we’ve seen that he’s been one of the best cases for a hemispherectomy,” Tiernae said.

Now, William goes to school and participates in sports just like every other boy his age. William can read and write, and play baseball and Wii games. But his favorite thing to do is run.

Tiernae said she realized early on that William did better running than walking. This, she said, was because the thumping and pounding of a run was easier for his brain to find rhythm with.

Since moving to Indiana more than a year ago, William has been training with Pleasant View Elementary running coach Kara Gongwer, as part of the PVE Running Club.

“William signed up for running club to run and get exercise. Instead of spending hours inside a gym doing physical therapy he can be part of a club that encourages physical fitness,” Tiernae said. “William loves people and makes friends quickly. He would much rather be with his group of peers working on similar goals. He would tell me after running club the names of the friends he made that day. He liked that he could cheer them on to keep running by using their names.”

This year, William is signed up to run in the annual Z’Run school fundraiser that will take place on April 26.

“He was jumping up and down when I told him about Z’Run,” Tiernae said. “He will just love to compete in that race. Even if he’s tired from running, his brain doesn’t know anything different. It’s used to being fatigued. But running helps him, and he loves it.”

What is a hemi?

A hemispherectomy, otherwise known as a hemi, is the removal of an entire hemisphere of the brain. It is the most radical brain surgery in neuroscience today. Hemispherectomies are used to help people suffering from brain disorders and multiple seizures.

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