Family’s hopes rest in radical surgery
4-year-old to have half of his brain removed to help stop seizures
Gibson Huston, his yellow mop of hair glowing in the sun, was jumping around on the jungle gym like any other 4-year-old would.
It was Thursday morning, his mother was getting ready for the school year as a teacher at Raintree Montessori, and Gibson didn’t have a care in the world on the playground.
That’s the thing about Gibson – most of the time, when a seizure isn’t paralyzing his body, he’s like any other kid. He likes looking at big construction equipment, dancing to bluegrass music and making stuff with Play-Doh.
You’d never guess, in a matter of weeks, he’ll have half his brain removed.
“People are in disbelief,” said Jacquie Stineman, a friend of Gibson’s family whose daughter is in his class at Raintree. “When you look at Gibson, it’s hard to believe he has something this seriously wrong.”
Gibson, who often goes by “Gibby,” will go to the UCLA Medical Center in a couple weeks for a hemispherectomy – a rare procedure still considered controversial by some physicians.
But his family figured this is his best shot at having a normal life without seizures, even if the surgery will cause some physical impairments.
“If we didn’t do this, he would lose his cognitive abilities and his rate of mortality would go up,” said his mother, Saasha Huston, 33. “It’s physical hardship versus keeping his cognitive abilities.”
The seizures come about four times a week, mostly at night.
They take over his body for five seconds to six minutes, and he looks like he’s choking. Afterward, he sleeps.
“He hasn’t got hurt having one,” Saasha Huston said. “He’s been really lucky.”
Sometimes he’s at school when the seizures strike, and the teachers at the Raintree preschool tell the other children that “Gibson’s body is hurting” and they should “give him space.” Afterward, when he sleeps, they just tell the children he’s tired.
His classmates don’t understand, but they know Gibson goes to the doctor a lot, and so they’re worried about him.
Support the Gibson Huston Love fund
A fund has been established to benefit Gibson Huston’s medical expenses.
Donations can be sent to the Gibson Huston Love Fund, c/o Raintree Montessori School, 4601 Clinton Parkway, Lawrence 66047.
Also, the 1-mile fun run at the 2007 Raintree Run – which is being renamed to benefit the HealthCare Access clinic – will benefit the Huston family. The run will be April 15.
The seizures are caused by hemimegalencephaly, a condition that caused the left side of Gibson’s brain to develop faster than the right. The hemimegalencephaly is a result of Hypomelanosis of Ito, a genetic condition.
“It’s extremely rare,” said Dan Huston, Gibson’s father. “It’s so rare they don’t even have a number for it.”
Gibson had his first seizure at age 2 years, 9 months. The regular seizures started seven months later. They’re worse when he has a fever or other ailment, and they come despite being on three anti-seizure medications.
There are a few signs of the disease other than the seizures – he sometimes struggles for words, is slightly delayed developmentally and is weak on the right side of his body.
But Karla Knudson, one of Gibson’s teachers at Raintree, said the children don’t notice.
“He doesn’t stand out in our room,” she said. “The kids take care of each other, and they take care of him.”
Dr. Gary Mathern, a brain surgeon at UCLA Medical Center, hears the shock in people’s voices all the time.
They can’t believe he can remove and disconnect half a child’s brain. It goes against what they were taught in elementary school science class.
“It’s two surprises,” Mathern explained. “It’s that we can do it and get away with it, and that the outcomes can be so positive.”
He said hemispherectomies for seizure patients trace their origins back to the 1950s but re-emerged in their current practice in the late 1980s, when they were first used for child patients.
Now, his hospital is one of about six in the world that perform the procedure in children.
On Sept. 21, Mathern plans to remove a third of Gibson’s left brain hemisphere and disconnect the other two-thirds of the brain’s wiring, because the left half is what is causing the seizures. Studies have shown the side effects are less when part of the brain remains in the skull but is disconnected.
There are risks with the procedure itself, though Mathern said only one of the 150 children his hospital has performed the surgery on has died.
Even if the surgery itself goes well, there’s still a 25 percent chance removing the left hemisphere won’t make the seizures stop, and, either way, Gibson will be on medication the rest of his life.
After the surgery, Gibson will walk with a limp, won’t be able to use his right hand and won’t have peripheral vision from his right side.
But without the surgery, he would continue to lose cognitive ability – likely entering adulthood with an IQ of less than 60 – and would have an increasingly high mortality rate as his life progressed.
“I want to give him the best chance of cognitive abilities,” Mathern said. “In Gibson’s case, we’re trading physical handicap for cognitive benefit. This is what the Hustons had to go through. This is what is described by families as the ‘doom and gloom discussion.'”
It was a decision that didn’t come easily for the family.
“That’s what tipped me toward surgery,” said Dan Huston, 33, a self-employed electrician. “Even if he’s on seizure medication that’s working, if he gets a fever he’ll have a seizure. His quality of life will not be what it should be.”
Mathern said many physicians don’t recommend surgery because they attended medical schools that didn’t have epilepsy surgery programs and, at the time, thought it wouldn’t work. But he says much has changed since then, and many families are finding it to be their best alternative.
Gibson likely will spend 10 to 14 days in the hospital after the 12-hour surgery, and he’ll require physical and occupational therapy after the surgery to help the remaining right half of his brain re-learn to perform most tasks.
But Mathern thinks Gibson’s attitude and personality will help the process.
“The young have more plasticity,” he said. “For you and I, if we contemplate this notion, we might get depressed. If you don’t know the difference as a kid does, he just does it. The better outcome – cognitive outcomes – come from those kids who come in better cognitive shape. Gibson’s in pretty good shape. He has a very bubbly personality, and that bodes well for that.”
If Gibson is known for anything more than the seizures, it’s his famous hugs.
He’ll dish them out to anybody – classmates, teachers, family, complete strangers.
“He’s always hugging people,” said Stineman, the family friend. “He’s enthusiastic, happy and effervescent. I think his personality and spark is contagious, and it’s always been that way. He’s absolutely adorable – warm, snuggly and cute. He captures your heart instantly.”
Saasha Huston’s parents founded Raintree Montessori School, 4610 Clinton Parkway, and have started or supported several benefits for families over the years. Those include Jack’s Mile, in honor of Stineman’s son who died in a 2002 car accident, and the 2004 Raintree Run, which benefited the family of Sarah Elbayoumy, who was killed in a 2003 car accident.
Now, the Raintree family is supporting the Huston family with donations for the surgery, which likely will cost around $1 million. Insurance will cover a portion of the costs.
“Their family has done so much for the community,” Stineman said. “We’re glad to see the community there for them. Nobody deserves it more. I can’t think of anyone who has more love in their hearts than that family.”
So, for now, the Hustons are trying to focus on the hope they feel with the upcoming surgery.
“Life is pretty normal, if you take out the seizures,” Dan Huston said. “He’s still a kid, and he’ll still be a kid afterward.”
Ann McDonald, another of Gibson’s teachers, said the school community is both hopeful and scared for the next month.
But she said what truly makes Gibson who he is – those generous hugs – aren’t part of his brain.
“I don’t think that will go away,” she said. “That’s in the heart.”