From constant seizures to almost none: Removing part of brain controls girl's epilepsy
November 16, 2008
Surgeons at the University of Chicago Comer Children's Hospital told Jessica Nelson one of the scariest things she will ever hear as a parent: they wanted to treat her daughter's epilepsy by cutting out or disconnecting half of her brain. Then something extraordinary happened: it worked.
Suffering from seizures, her daughter, Brooklyn Bauer, had undergone different treatments and tried different medications for more than three years with no success. Her speech and motor skills were extremely delayed. She walked on her knees and spoke in two-word phrases.
Now after surgery and recovery, Brooklyn is in kindergarten. She has come a long way from the time when she was heavily medicated and lethargic, and has even become a spokesperson for the Epilepsy Foundation's Northern Illinois region.
Nelson remembered how her daughter's seizures were barely visible, but she had that sense as a mother that they were happening. "She would show facial twitches and her eyes would glaze over. She was on Valium all the time, had little energy, slept a lot, and missed so much preschool because of doctor visits and hospital stays," Nelson said.
When it became clear that Brooklyn was not making progress, Jessica brought her daughter from Rockford to Comer Children's Hospital, where pediatricians discovered just how extensive the seizures were.
EEG scans showed Brooklyn was experiencing nearly constant epileptic activity every one to two seconds -- whether she was awake or asleep. The left hemisphere of her brain showed significant damage with little positive brain function. The injury was related to brain hemorrhaging that occurred when she was born 12 weeks premature.
Michael Kohrman, MD, a pediatric epileptologist and associate professor of pediatrics and neurology, said that after a child fails with two or three anti-seizure medications, there is little chance that another medication will work. However, he still desperately wanted to give Brooklyn relief.
Kohrman, along with David Frim, MD, PhD, chief of neurosurgery, reviewed her case and concluded that Brooklyn's brain would function better without the left hemisphere. The right hemisphere of Brooklyn's brain was healthy.
"The seizing tissue in Brooklyn's brain had lost its capability to function productively, so disconnecting or removing it paradoxically allows the remaining brain to function better," Frim said. "Once we identified Brooklyn as a candidate for surgery, we were able to move within two months to complete all testing and perform the surgery."
Everyone involved recognized the gravity of the surgery and the need to support the family. Patti Ogden, APN, a nurse practitioner and epilepsy coordinator for the Children's Hospital, was instrumental in managing the many details related to Brooklyn's diagnostics, surgery and medical treatment--acting as a key point person for physicians and the girl's family. She educated Jessica about the diagnosis, procedure, and Brooklyn's subsequent care. "When we're asking to cut away part of your child's brain, it's essential to gain the family's trust," Ogden said.
Lead surgeon Frim, along with the pediatric neurology team, performed a functional hemispherectomy: removing most of the brain's left temporal and occipital lobes, and severing all neuronal connections from the left parietal and frontal lobes to the healthy right hemisphere and to other parts of Brooklyn's body. Within a few weeks after surgery, her speech returned, her personality blossomed, and her motor skills gained strength.
Kohrman explained, "The left hemisphere of Brooklyn's brain may still be active electrically, but it can no longer communicate with, or harm, the rest of the brain."
November 2008, two years after surgery, was a milestone and good indication that Brooklyn has gained remarkable function. After her medications were readjusted, Brooklyn's seizures are under control. She's even running now--something her family never thought would be possible.
"She is right on track developmentally now, and started kindergarten this fall in a regular classroom--not a special-ed class. I can't describe how far Brooklyn has come from where she was. She just shines now," Nelson said.
After such a dramatic surgery, Brooklyn continues to be monitored by her physicians and her brain and motor functions are frequently reassessed. Kohrman continues to evaluate her neurological function, and Frim monitors her brain shunt that was implanted after the surgery.
It was an agonizing decision to have part of her daughter's brain removed, but Jessica knows she made the right choice.
"My daughter is the epitome of an epilepsy success story," Jessica says.
About the University of Chicago Medical Center
The University of Chicago Medical Center, established in 1927, is one of the nation's leading academic medical institutions. It consists of the renowned Pritzker School of Medicine; Bernard Mitchell Hospital, the primary adult patient care facility; Comer Children's Hospital, devoted to the medical needs of children; Chicago Lying-in Hospital, a maternity and women's hospital; and the Duchossois Center for Advanced Medicine, a state-of-the-art ambulatory-care facility with the full spectrum of preventive, diagnostic, and treatment functions. Care is provided by more than 700 attending physicians - most of whom are full-time University faculty members -- 620 residents and fellows, more than 1,000 nurses and 9,500 employees.
The Medical Center is consistently recognized as a leading provider of complex medical care. It is the only Illinois hospital ever to make the U.S.News & World Report Honor Roll, with eight clinical specialties--digestive disorders; cancer; endocrinology; neurology and neurosurgery; heart and heart surgery; kidney disease; geriatrics; and ear, nose and throat--ranked among the top 30 programs nationwide. The Medical Center was awarded Magnet status in 2007, the highest level of recognition for nursing care.