Sixteen years ago my parents sat in a tiny quiet recovery room in Los Angeles for 30 hours while my sister had one half of her brain cut out by doctors who flew half way around the world from the country of South Africa. Why? She had Rasmussen’s Encephalitis and was undergoing a hemispherectomy.
Rasmussen’s Encephalitis is an extremely rare neurological disorder that causes severe uncontrollable seizures. Brandi was diagnosed with Rasmussen's Encephalitis at age five. Within a few short weeks my sister went from having no seizures to 200 every day. She had them 24 hours a day, 7 days a week. All she did was seize. Rasmussen's Encephalitis often has a quick onset wherein the child begins having petite mal seizures that start as staring episodes which then graduate into partial complex seizures and then full blown tonic clonic type seizures, in other words Grand malls. Brandi had tonic clonic seizures that went on for hours. My parents were in a rush to save what they could of Brandi’s brain, the side not having seizures. Because the cause of Rasmussen's Encephalitis it really not known for sure, where and when Brandi got it, we'll never know.
The cure, a hemispherectomy, was now Brandi’s only hope. After numerous antiepileptic medications which proved futile, and countless tests that included EEG monitoring, CAT scans, MRI’s and PET scans, and nearly one year in Intensive Care Units, doctors diagnosed Brandi with Rasmussen's Encephalitis when she was six. "The only cure for your daughter", doctors said, "is a hemispherectomy". My parents felt relieved, a cure was in site, but they were in for the shock of their life, when they found out what was involved. A surgical procedure in which the affected part of the brain, the side having seizures, is disconnected and removed from the rest of the brain. “Your daughter may die during surgery”, said the doctors, “At best she will be half paralyzed, loose half of her eyesight, never have an appreciation for art, music, or mathematical skills.” “Why?”, my parents asked. The doctors replied, “The right side of your brain controls art, music, abstract thought, and creative thinking. It also controls the left side of the body, as well as it is responsible for half of your eyesight, even half of your memory”. If she were to survive the surgery, my parents expected a child who would be mentally retarded and wheelchair bound at best.
Brandi survived and six weeks later left California and flew home to Colorado, where her bright purple wheelchair awaited her arrival. When she was put into the wheelchair she wanted to get out, not knowing she was paralyzed. When she found out she could no longer walk, she cried. That was the beginning of her recovery.
After her hemispherectomy, Brandi’s hard work to recover paid off. For the first five years, Brandi worked without let up and made enormous strides. Intensive therapy was started with the hope of teaching Brandi’s left brain to perform functions that were once right brain functions. For example, it was hoped, through therapy, that Brandi’s left brain would begin to move her left leg. For normally, it is the right side of the brain, which Brandi was missing, that moves the left leg. Through stimulation, Brandi’s left brain was being retrained to develop new pathways to help her recover some of the things she lost when the right side of her brain was removed. Ten years after Brandi’s hemispherectomy, while in middle school, she now walked, talked, and acted like any other teenager. Ten years earlier the doctors told my parents she would never be able to do math. By now she was achieving A’s in algebra. When six years old, doctors said she would never draw or appreciate art. At 13 years old, two of Brandi’s drawings were selected to hang in Congress offices. Nearly 15 years after her hemispherectomy, my sister graduated Canton High School as a member of the National Honor Society. She has appeared on ABC News 20/20, in Time Magazine, and many textbooks. She has also been a featured speaker at the 8th International Conferences on Thinking, talk shows in Canada, and been featured on the Tokyo Broadcasting System throughout Asia. Today she is an artist and a public motivational speaker who has inspired millions worldwide to reach above their disabilities and make a better life for themselves.
What have science and doctors learned about life after a hemispherectomy? Never say never! The human brain is an amazing thing. My sister is living proof that through great amounts of stimulation and hard work, a child’s brain has the miraculous ability to relearn functions lost. Stimulate, stimulate, stimulate. Challenge, Challenge, Challenge the human brain and never stop!
