Bella Thumann's Story
My doctors were amazing and were there for me every step of the way. I was so happy that they were the team who took care of me.
Not Your Normal Seizures
Temper tantrums are a normal part of many children's early years. But when Bella's kindergarten teacher witnessed her behavior changes in school, she knew they were not ordinary temper tantrums. She suggested they were something far more serious: epilepsy.
Her parents, Lorraine and John, learned when Bella was just 5 that she did indeed have epilepsy. "Bella's seizures were not what you would think of as typical epileptic seizures," says Lorraine. When the seizures became more frequent, Bella was admitted to a New Jersey hospital, not far from the family's home in Monroe, New York. She then began receiving care at a major academic medical center in New York City, and for the next several years her seizures were controlled with medication.
By the time she finished 4th grade, the seizures had returned — but this time, they arose as auras. "Bella would say, 'Someone is standing behind me,' and then she'd go running and screaming," recalls Lorraine. "Again, they didn't look like normal seizures." Her doctors switched from one medication to the next over the next few years, but to no avail. "Med after med after med — nothing was working," adds Lorraine, a one-on-one monitor to special education children.
The screaming and running were especially hard on Bella when she was in middle school. An avid soccer player, an aura could send her into a tizzy on the field. "I remember kids pointing at me and laughing," notes Bella, now 19. "They didn't understand what was happening. It was embarrassing." She was also bullied.
"It was ruining her life," adds Lorraine. It was also hard on her older sisters, Jordan and Carlie, to watch what was happening to their little sister.
In October 2012, Lorraine and John knew another approach was needed. They were referred to Dr. Cigdem Akman, Director of the Pediatric Epilepsy Program and now Director of Child Neurology at NewYork-Presbyterian Morgan Stanley Children's Hospital at Columbia University Irving Medical Center. "Dr. Akman treated Bella like her own daughter. Her compassion and bedside manner are amazing," says Lorraine.
Dr. Akman's recommendation: surgery to remove the brain tissue responsible for Bella's seizures. She connected Bella and her family with pediatric neurosurgeon Dr. Neil Feldstein, and epilepsy neurosurgeon Dr. Guy McKhann, who work as a team to care for epilepsy surgery patients. Then 13, Bella had a long list of questions when she sat down to speak with her surgeons. "I was really nervous because it's my brain, but also happy because I knew my life could become so much better," she explains.
"Dr. Feldstein and Dr. McKhann treated Bella with such respect, speaking to her like an adult," adds Lorraine. "They spoke directly to her, not to me, as they answered her questions." In January 2013, Bella had two surgeries: one to implant electrodes on her brain to pinpoint the location of her seizures, and a second surgery to remove the offending segment of brain tissue, which was about the length of three thumbs.
She stayed in the hospital for 10 days, returning home for recovery and tutoring before returning to school at the end of that February. It was rough going: the surgery removed parts of her brain responsible for focus and organization. Many of her friends were fellow soccer players, but she couldn't play anymore and withdrew from them. Her movement was slower and she found it challenging to process thoughts. The first six months were a struggle, but she then turned a corner and began to improve. "It took a year for me to get back to my full self," says Bella.
The surgery was a success, and she remains seizure-free. She graduated from high school on schedule and now attends Mount Saint Mary College, where she is a social sciences major studying childhood education with a focus on special education. Having had a 504 educational plan herself to address her academic challenges as a result of her epilepsy and its treatment, she plans to become a special education teacher. "When I was little, I used to come home from school, line up all my stuffed animals on my bed, and play the teacher," explains Bella, who is already a member of the education honor society Kappa Delta Pi. She no longer needs medication and doesn't even need follow-up visits anymore with Dr. Akman and her neurosurgeons.
"My doctors were amazing and were there for me every step of the way. So were my nurses after surgery. I wasn't the best patient to deal with, but they were really great with me," adds Bella. "I was so happy that they were the team who took care of me."