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The concept of removing such a significant portion of the body's most vital organ is nearly 100 years old. Walter Dandy, a Johns Hopkins researcher, removed a patient's right hemisphere to eliminate a malignant brain tumor in 1923. The patient survived, but the surgery didn't prevent the cancer from coming back.
The procedure fell out of favor, Bingaman says, until the 1950s, when doctors started using it to treat debilitating epilepsy in children. The idea was to remove the part of the brain that was the source of the seizures. But in the 1960s, many patients suffered complications. In some, the remaining half of the brain began to shift into the empty space. In others, the brain started to hemorrhage, or fluid built up in the empty cavity. But as technology advanced, hemispherectomies became a viable option again in the mid-'80s.
That option is open only to kids, though. The brain grows and gains mass for about the first seven years of a child's life, and subtle changes continue to shape the brain for the next 10 years. Surgeons believe that only children younger than 16 can rebound physically after a hemispherectomy.
In September 2005, Michelle Johnson missed her stepbrother's wedding, and the family drove the 13 hours to Cleveland. For five days, Olivia sat in a hospital bed, her head hooked up to a monitoring device that kept track of seizure activity. At the end of the week, doctors said Olivia's best chance was a hemispherectomy.
"If we wanted her to lead any kind of normal life, she'd need this surgery or the seizures could actually kill her," Michelle says.
It was a long, silent ride home to Olathe.
"God, I had a hard time," Michelle says. "I would cry a lot thinking about her head being cut open and her brain removed."
The Johnsons didn't worry that their daughter would die. The mortality rate is less than 1 percent, and in seven years of surgery, Bingaman had never lost a patient. But because there was so much activity in her brain scans, doctors could give Olivia only a 60 percent chance that the surgery would cure her seizures.
The day before Thanksgiving in 2005, Michelle cut Olivia's long, blond hair and donated it to Locks of Love. Then she and Jeff tried to explain to Olivia what was about to happen.
"We just told her a couple of days before that she was going to have a boo-boo on her head," Michelle says. "But those seizures, I don't have any clue what they did to her, but they just affected her a lot. She didn't understand what was about to go on."
On December 8, 2005, less than two months after her 6th birthday, Olivia woke up at 5 a.m. at the Cleveland Clinic Guesthouse and took a shuttle to the P Building at the sprawling surgical center. Her head was shaved and secured in a three-pronged skull clamp. Bingaman describes the surgery as a painstaking archaeology dig. With a purple marker, he draws the long incision line, curving around the side of the skull like a reverse question mark. To get to the brain, Bingaman must cut through four protective layers.
With a scalpel, he slices through the scalp. He peels it back to expose an oval-shaped temporalis muscle, which contracts to move the jaw when it chews. He carefully carves through the deep-red fibers, setting the sliver of muscle aside to be reattached later.