This past summer, Amber R., 15, of Lincoln, Neb., underwent a radical operation called a hemispherectomy to remove the whole left side of her brain. Sean H., 8, of Gurnee, Ill., had the same surgery six years ago. Today both kids are doing pretty well.
Amber had Rasmussen's encephalitis, a rare disease that usually strikes young children. Doctors think it is caused by a virus or an immune response. For six years, she had been plagued with violent seizures that rocked the right side of her body. Sometimes they could be controlled by the 14 pills she took daily, but other times they came on fast and furious. When her medications worked, she could sew, baby-sit and play with her dog. But she had to give up her other loves -- gymnastics, softball and basketball -- as her seizures grew worse.
Because of a brain abnormality, Sean began having seizures when he was a few months old. He was never able to sit up, control his head movements or play with toys. He had surgery at 8 months to remove part of his brain, but the seizures came back. Two more surgeries at age 2 that removed the left side of his brain.
John Freeman, Amber's doctor at Johns Hopkins Children's Center, says: "Removing the damaged side of the brain allows the good side to exist. Without this operation, (the good side) can also become damaged," which could lead to retardation, paralysis, even death.
Most children have this surgery by age 10, but Amber and her mother hoped the drugs would work or a cure for her disease would be found. Her seizures started getting worse last year, and tests showed the disease was affecting her mental abilities.
Amber is one of the oldest known children to have this surgery. Her mom says she's doing well. For one thing, she has retained her memory and reading skills.
Today, Sean is in second grade. His development is a little delayed, and he can't move his right arm, but he can talk, walk, read, write and even run.
As Freeman says, "It takes an enormous amount of courage to undergo this radical operation, but it gives them back a life and a future."
c 1997 Chicago Tribune. Distributed by Knight-Ridder/Tribune, Inc.