Baby Has Half of His Brain Removed to Treat Seizures

PHOTO Evan Stauff had part of his brain removed in order to treat seizures
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Just short of one year old, Evan Stauff is a beautiful baby boy who gurgles and giggles like many others his age.

"He was born, I thought, much stronger than our other two sons when they started to develop," said Evan's father, Dave Stauff. "We kept saying, 'Wow, he is really developing quickly.'"

But now when Evan should be about to say his first words, his language development is lagging and he has trouble moving his right arm and leg. Even so, Evan is a medical miracle.

The little boy's rapid development stopped abruptly last April 1, April Fool's Day, an irony his family always mentions.

His mother, Kathleen Stauff, explained how terrified she was when she watched her son have his first seizure.

"I woke up to get up that morning and he was laying in the bed, having a seizure," she said. "I asked Dave to turn the lights on."

"At that point, I had never seen a seizure," her husband added. "To me, a seizure was like something you'd see on TV."

Evan's parents used a cell phone to capture video of their son that morning while he was seizing. His mother said Evan was non-responsive.

Courtesy the Stauff family.

"His whole body was rigid," she said. "His breathing was very shallow and fast. His eyes were fixated."

The Stauffs rushed their son to his doctor, and from there to the hospital. Doctors tried to control Evan's apparent epilepsy with medication, but nothing worked.

Evan continued to have waves of seizures, possibly hundreds of them every day. His parents recorded them on video and counted the number of spasms.

"It continued to progress," said David Stauff. "If anything, they were worse. ... Sometimes he'll almost bend in half. ... Other times, it's very slight."

As a school administrator well-versed in special education, Kathleen Stauff understood that Evan's condition was serious. David, a Coast Guard veteran who used to work on rescue boats, quit his job to take care of his son.

After many doctor and emergency room visits, it became clear that the seizures could not be controlled. The Stauffs eventually traveled from their home in North Bend, Ore. to the Mattel Children's Hospital UCLA in California, where they met with Dr. Gary Mathern, the neurosurgical director of the Pediatric Epilepsy Surgery Program.

Evan Was Experiencing Waves of Seizures

After looking at a video clip of Evan's seizures, Mathern described them as "hiccup-like." The infant's body tightened repeatedly, almost as if he was responding to a hiccup.

"They go again, and again, and again," he said while looking at hospital recorded video of the seizures. "The eyes shoot over, and you notice his discomfort. He does it again. The eyes shoot over to his left. Again, it's these crunches."

Evan was diagnosed with infantile spasms, a condition that can stunt brain development, and threaten a child's ability to learn to walk and talk. It can even lead to early death.

"Seizures, in the first couple of years of life, when your brain grows 80 percent of your adult size, are particularly devastating to development," Dr. Mathern said.

According to the Epilepsy Foundation, infantile spasms, also known as West Syndrome, most commonly begin within the first year of life in 90 percent of cases. The causes for the spasms are unknown and they are somewhat rare, affecting only one baby out of every few thousand.

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