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.
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