BOISE, Idaho — Evan Stauff was born on Jan. 11, and it was several months before his parents noticed anything unusual about their new bundle of joy.
"Everything was fine. He was starting to progress and develop rather quickly," said Evan's father, David Stauff, who has two other sons, 11 and 7.
But early one morning in April, they witnessed their son having a grand mal seizure. Stauff and his wife, Kathleen, who live near Coos Bay, Ore., took their son to a pediatrician.
Medical tests and scans of the boy's brain showed no trauma.
Evan was diagnosed with infantile spasms, which is a specific kind of epilepsy that develops in young children. The seizures come in clusters, and his episodes last five to 15 minutes; he typically has five clusters a day.
They are sometimes called "jackknife seizures" because of the way they appear — a sudden bending forward of the body with stiffening of the arms and legs; some children arch their backs. These children have abnormal electroencephalography (EEG) tests.
"They have very large voltage things occurring in the brain," said Dr. Gary W. Mathern, director of the Pediatric Epilepsy Surgery Program and Pediatric Neurosurgery Program at UCLA Medical Center.
The condition is associated with significant cognitive development problems. More than 90 percent of children with the condition are destined to have IQs below 50, Mathern said.
"They don't know mom and dad," he said. "They don't have language." Mathern said there are more than 100 possible causes associated with the condition. Some respond to medication, including steroids, but many don't.
The medications didn't stop Evan Stauff's spasms.
"He's gone through seven medication types," David Stauff said. "We've taken some of the more powerful, more popular ones that have had great success in other children ... Nothing has worked." But the Stauffs didn't give up. Research led them to consider a surgical option that sounds radical to the lay person — removing half of the child's brain to stop the seizures and allow for more normal brain growth and development.
It's called a "hemispherectomy." Evan had the surgery Tuesday, and it went well, his family said.
Both sets of Evan Stauff's grandparents live in the Treasure Valley (Payette and Eagle). They were all in Los Angeles to support Evan's parents and brothers.
"Everyone is hanging tough," said Stauff's father-in-law, Jeff Sands, a deputy fire marshal in the Idaho State fire marshal's office.
There was urgency to the surgery. "Once you can identify this, you want to intervene as quickly as possible," said David Stauff, who is hoping to help families in the Treasure Valley and beyond who may be going through the same thing.
Surgeons at UCLA Medical Center have done about 200 hemispherectomies for children suffering infantile spasms since 1986.
Mathern said surgery is most effective on very young children — younger than 2 — because the brain has "plasticity." "That's the ability of the brain to take over functions that it wasn't intended to do," he said.
Mathern said English physician William West first identified infantile spasms in his son more than 150 years ago.
In the 1930s, physicians treating brain cancer patients began removing parts of the brain as part of treatment. Mathern said that's when the broader medical community became aware that a person can survive without half of their brain.
In the 1950s, the surgery began on adult epilepsy patients. Mathern said UCLA Medical Center pioneered surgery on children in the late 1980s.
Surgeons do their best to determine which side of the brain is causing the seizures.
"The success rate for this is about 80 percent," Mathern said. "But one in five fail. We take out half the brain, and the seizures are still there." Evan Stauff had the left hemisphere of his brain removed Tuesday. That side governs movement of the right arm and leg, word/language-based memory and language.
"He'll walk, but he'll walk with a limp. He won't be able to use much of his right hand," said Mathern, who conducted the more than 10-hour surgery.
His peripheral vision on the right side will also be impaired. Mathern is optimistic that the right side of Evan's brain will take over language functions.
How does removing half the brain affect the child's personality? "I don't know where personality is," Mathern said. "I've taken out left hemispheres, and I've taken out right. The child's personality is the same afterward." Mathern said his most successful hemispherectomy patients have IQs in the 80s and 90s. They are able to dress and feed themselves, and in some cases, have finished high school.