Sara's Story: Surgery to Treat Epilepsy
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Sara lived with seizures until age 9. Her family flew 7,000 miles from United Arab Emirates so she could undergo epilepsy surgery at Children’s Hospital of Philadelphia. Every day since, Sara has told her mom how happy she is to have had the procedure.
Sara was Mariam and Tarek’s first child. When she was 3 months old, they saw her make sudden jerking movements. As first-time parents, they weren’t sure if the movements were normal for a newborn, or if they were signs of something concerning, so they took Sara to their pediatrician in the United Arab Emirates (UAE).
During the appointment, Sara didn’t make the movements, so the physician was unable to determine exactly what was going on. Her MRI brain scan and EEG were also normal. Sara continued to experience similar episodes every three months or so. In the beginning, the episodes would last less than a minute and then she would resume her normal behavior afterward. Over time, Aria started to experience right-sided stiffness after each episode.
Mariam recorded Sara in the throes of an episode and showed their physician. Thanks to the video, the physician was able to identify the episodes as seizures. Sara was diagnosed with epilepsy and began taking a medication to control the seizures.
Despite being on medication, for the next year, Sara continued to experience a seizure every three months. Her physician first tried increasing the dosage of the medication she was on. When that didn’t help, he switched her to a different medication, which controlled Sara's seizures relatively well for about five years.
Then, in 2020, when Sara was 8 years old, the seizures increased in both frequency and severity. She had multiple seizures per day — sometimes as many as 10 — both day and night. She had difficulty walking due to weakness on her right side. Her physician added an additional medication to her regimen, yet the seizures continued. She needed an aide at school and struggled to concentrate due to the side effects of her medications.
In January 2021, Mariam and Tarek took Sara to a specialized pediatric hospital in the UAE. After a thorough evaluation that included a 24-hour video electroencephalogram (EEG), a neurology specialist told them that because of the types of seizures Sara experienced, medications would only ever offer her a brief “honeymoon period” of seizure control lasting a few months at best. Because her seizures were originating from one particular area of her brain, she could be eligible for a surgical procedure to remove that part of the brain. Epilepsy surgery offers hope of complete seizure freedom.
The middle east doesn’t have robust pediatric epilepsy surgery programs. While Sara's neurologist was in the process of determining where to refer her for surgery, he had an appointment with a 4-year-old who coincidentally had just undergone epilepsy surgery in the United States. The child’s surgery had been performed by Benjamin Kennedy, MD, Attending Neurosurgeon and Director of Epilepsy and Functional Neurosurgery at the Neuroscience Center at Children’s Hospital of Philadelphia (CHOP).
The family offered to talk to Mariam about their experience at CHOP. “[The child’s mother] said, ‘Go for it. You’ll wonder why you waited,’” recalls Mariam of their conversation.
Mariam went online and read all she could find about CHOP and Dr. Kennedy. An adult endocrinologist herself, she was impressed by Dr. Kennedy’s credentials and experience with epilepsy surgery. She applied for a medical visa in the hopes that her daughter would be eligible for treatment at CHOP.
While the family was waiting for their visas to the U.S., CHOP’s Global Medicine team reached out to prepare them for their trip to Philadelphia and Sara's evaluation. In January 2022, they flew to Philadelphia for Sara's first appointment at CHOP.
The goal of the five-day evaluation was to confirm that Sara's seizures were, in fact, coming from one location in her brain. If they were, she would be eligible for a resection. In this procedure, the part of the brain with abnormal activity is surgically removed through a craniotomy. By removing this abnormally formed part of the brain, seizures would likely stop.
Dr. Kennedy explained the risks and benefits of the procedure. The seizures were emanating from a part of the brain that controls movement on the right side of the body, so the side effect after surgery is weakness on that side. However, with consistent physical and occupational therapy in the weeks after the procedure, function can gradually improve.
It was a lot for Sara and her parents to take in. They had flown 7,000 miles west in the hopes that Sara would be eligible for the procedure, but the sudden reality that their young daughter might undergo brain surgery also frightened Mariam and Tarek.
For Sara, however, the chance to be truly seizure-free for the first time in her life was worth the risks. After the meeting with Dr. Kennedy, she told her parents she wanted to go through with the surgery.
Two weeks later, as Sara was being prepped for surgery, she had a seizure. Her mom recalls telling her, “Don’t worry. This will be your last one.”
So far, that prediction has held true.
Immediately after the resection, Sara could not move her right side at all. She never complained about that side effect, says Mariam. In fact, every day she told her mother how happy she was.
Sara spent a month in inpatient rehabilitation at CHOP’s Seashore House, which Dr. Kennedy calls “the place where magic happens.” She had regular physical therapy, occupational therapy and speech therapy appointments to build back function on her right side. A music therapist who visited her room regularly lifted her spirits through music and also helped her rebuild function by encouraging her to use the right side of her body to play musical instruments.
Mariam was by her daughter’s side throughout her stay at the Seashore House and saw the “magic” firsthand.
“Every day, a new muscle would move,” she says. “At the Seashore House, the children meet daily at the activity room, and the child life specialists do a great job there.”
Sara loved her time in the Seashore House, which made her last day as an inpatient bittersweet. When her care team wrote “happy last day” on the white board in her room, she told her mother, “I’m not happy! I want to stay!”
When a patient is discharged from the Seashore House, the care team holds a parade. Mariam recorded her daughter’s parade on her phone. It shows Sara walking on her own, without assistance, down a hallway lined with staff who are singing and smiling. Everyone from her rehab therapists to Environmental Services staff was there cheering for her.
Sara watches that video every day and “looks at Dr. Kennedy as the person who changed her life,” says her mom. Mariam adds that the family is truly grateful to every single member of Sara's care team, running through the litany of specialists who have cared for her daughter by name.
Sara will continue to have physical and occupational therapy, as well as regular checkups with her neurologist, at home in the UAE. If she remains seizure-free six months after the procedure, she can begin to taper off her medication and may eventually be able to come off it entirely.
“I cry every day,” says Mariam of the experience.
“At CHOP, we always felt supported and that our child was in safe hands. They work from the heart.”