Ela Allam, 9, smiles outside her home in Raleigh, NC.
Ela Allam was diagnosed with epilepsy at age three and started taking anti-seizure medications. As Ela grew, her seizures became more frequent and more dangerous. Worried for her safety, Ela’s parents brought her to Duke Health, where she underwent epilepsy surgery that disconnected the part of Ela’s brain causing her seizures in May 2022. Ela hasn’t had any seizures since, and her parents say she’s thriving.
Watch Ela's story.
Perinatal Stroke Damages Ela’s Brain
Ela seemed like a perfectly healthy newborn, but within a few months, her parents Alex and Mai Allam noticed weakness on the left side of her body. An MRI showed that Ela had experienced a perinatal stroke before she was born that damaged part of her brain. Around her first birthday, Ela started having episodes that her parents suspected were seizures, but Ela wasn’t officially diagnosed with epilepsy until several years later.
Seizures Worsen, Medications Aren’t Enough
Despite taking multiple anti-seizure medications, Ela’s seizures worsened as she got older. She was having three or four seizures a day, they were lasting longer, and they were getting more dangerous. She often fell during her seizures and lost consciousness. “I was afraid she was going to break a bone or something, so we made sure everything in the house was soft. There were no knives around, no tables with sharp corners, no glass.”
Because Ela’s brain was so busy seizing, she was also falling behind in school. That’s when her parents brought her to Duke to see pediatric epileptologist Muhammad Zafar, MD and pediatric neurosurgeon Matthew Vestal, MD.
Advanced testing showed that Ela’s seizures were coming from the right side of her brain. Fortunately, Dr. Zafar and his colleagues believed that Ela’s brain had shifted important functions away from the damaged area to other parts of her brain.
“In normal development, the right side of the brain controls the left side of the body, and vice versa,” Dr. Zafar said. “If the right side of the brain is injured while the brain is still developing, the other side of brain takes over the function of controlling that arm and leg and so on.”
Doctors Perform Hemispherectomy
Dr. Zafar and Dr. Vestal recommended Ela undergo a hemispherectomy to disconnect the damaged side of her brain from the healthy side. The procedure would stop seizures without affecting Ela’s function, they said. At first, Ela’s parents Alex and Mai were against the idea, but they went ahead with the surgery in May 2022 because of Ela’s decreasing quality of life and the chance that she could be seriously injured during a seizure.
Ela’s World Opens Up
According to her parents, Ela has blossomed since her surgery. “She started reading, which she didn’t do before,” Alex Allam said. “Her handwriting has improved. Her teacher says she’s doing tremendously well in school. She learned to swim. She started asking so many questions. She started looking at things in a different way. She wants to explore everything.”
“Now she is ready for a beautiful future,” said Mai Allam.
Considering Epilepsy Surgery for Your Child? Come to Duke
Dr. Vestal said he’s thrilled with Ela’s success and hopes to help more families who might be nervous about epilepsy surgery for their children. “Ela's life after surgery is 100% different than before surgery,” said Dr. Vestal. “She's the same precocious little kiddo she was before, but now she's able to go through life without one hand tied behind her back from the seizures. The power of what we offer with epilepsy surgery here at Duke is to unlock a child's potential.”