Kaden's Inspiring Journey: Seizure-free after undergoing life-changing epilepsy surgery
Kaden Hickman’s battle with epilepsy has been a tumultuous journey, defined by a series of trials, moments of hope, and, ultimately, a life-changing surgical intervention. Diagnosed with epilepsy at the age of 5 months, Kaden, now 14 years old, and his family embarked on a challenging path, exploring various medications in pursuit of a cure. It was a journey that tested their patience, strength, and optimism. However, in the end, surgery became the ray of hope that would change Kaden’s life.
Kaden's Epilepsy Journey
Kaden’s journey began when he was just 5 months old. His mother, Ashlee, started noticing subtle signs that something wasn’t quite right. His right arm started jerking involuntarily. His head would drop and his eyes would roll back. As these odd behaviors grew more frequent, Ashlee realized something was wrong.
“We noticed it happening once every couple of days,” Ashlee said. “As time passed, the episodes became more frequent. Worried and concerned, my husband and I decided it was time to have him checked out.”
When the Hickmans brought their son to CHRISTUS Santa Rosa Hospital, Kaden had an episode while they were in the emergency room. The medical team quickly performed a CT scan, revealing that Kaden had suffered a stroke while Ashlee was pregnant with him. This early trauma was the underlying cause of his epilepsy, and it resulted in Kaden experiencing cerebral palsy on the right side of his body.
Kaden’s visit to many pediatric neurologists marked the beginning of a challenging and lengthy journey to find effective treatments for his seizures which were isolated to the right hemisphere of his brain. From the ages of 6 months old to 3 years old, his family consulted various pediatric neurologists, each offering their own unique approach to addressing his seizures. Initially, they prescribed different anti-seizure medications which controlled his seizures for about a year or two. However, over time, Kaden began experiencing breakthrough seizures, which signaled the ineffectiveness of these medications.
When Kaden was around 3 years old, one of his pediatric neurologists recommended a vagus nerve stimulator, but his parents initially hesitated to consider this procedure for someone so young. As a result, they were referred to a pediatric neurologist in Houston, who suggested an alternative approach: temporarily discontinuing Kaden’s anti-seizure medications to closely observe its impact.
“When we stopped the medications, Kaden had no seizures until he was about 7 or 8 years old,” said Ashlee. “When he was a baby, he experienced infantile spasms. These spasms made his right arm jerk and his head drop. However, doctors told us that while kids usually grow out of it by 2 or 3 years old, they cautioned us that seizures might come back in a different form. When Kaden’s seizures returned, they originated on the right side of his brain. He was mimicking infantile spasms but at an older age.”
When Kaden’s seizures returned, the Hickmans sought care from doctors at CHRISTUS Children’s Neurosciences Center. Dr. Melissa Svoboda, division chief of neurology, evaluated Kaden and referred him to her partner Dr. Gustavo Charria-Ortiz who had extensive experience with pediatric epilepsy. It was through Dr. Charria-Ortiz that the Hickmans were introduced to Dr. Mark Lee, division chief of neurosurgery and a renowned pediatric neurosurgeon who played a pivotal, life-changing role in the next chapter of Kaden’s epilepsy journey.
Preparing for epilepsy surgery
Kaden’s doctors eventually broached the topic of brain surgery when it became clear that medications were not adequately controlling his seizures. In August 2022, the family met Dr. Lee who recommended a hemispherectomy, a surgical procedure in which one hemisphere (half) of the brain is either partially or completely removed or disconnected from the other hemisphere. This delicate procedure is primarily used to treat severe and intractable seizures especially when the seizures originate in one hemisphere of the brain and are resistant to other forms of treatment like medication or other surgical interventions.
While the idea of brain surgery was frightening, it became essential to improve Kaden’s quality of life.
“It was really scary on an emotional level,” said Ashlee. “No one wants their child to go through brain surgery. The more I read up on hemispherectomy, the more my anxiety grew. But I had to get past my fear because Kaden’s epilepsy was becoming life-threatening as he started having seizures at night. Dr. Lee explained that this was the only option to treat his seizures. After talking with Dr. Lee, we started feeling a bit more at ease and realized it was the only way to give our son freedom from his seizures.”
On September 16, 2022, Dr. Lee performed a hemispherectomy on 13-year-old Kaden that lasted approximately seven hours. In this operation, Dr. Lee disconnected the right hemisphere from the left.
“We performed a hemispherectomy by disconnecting Kaden’s right hemisphere, where the seizures originated, from his left hemisphere,” said Dr. Lee. “This surgical approach was crucial to effectively treat his seizures. By isolating the affected right hemisphere from the left, we were able to eliminate the source of the seizures while preserving the vital functions of the left hemisphere. The separation was essential to ensure Kaden’s overall well-being and provide him with a chance at a seizure-free life.”
Kaden spent a week recovering at CHRISTUS Children’s following his brain surgery.
“After the procedure, everything looked amazing,” said Ashlee. “At first we worried that he might lose some of his motor and speech function, but that wasn’t the case. Four or five days after his brain surgery, Kaden was up and about, chatting and even cracking jokes with everybody. It was truly a blessing that his motor function and speech remained unaffected after surgery. It was the best outcome we had hoped for.”
Kaden was expected to be out of school for three to four months after his brain surgery, but Dr. Lee gave the green light for Kaden to return after just six weeks. This early return to school was made possible by his remarkable progress, thanks to his physical therapist who helped him hit those recovery milestones.
Since his surgery one year ago, Kaden has been seizure-free. Currently, his doctors are gradually tapering his one seizure medication that he’s taken since surgery, with the goal of discontinuing it in about a month.
Kaden is a happy, fun-loving kid who’s passionate about baseball, playing video games and spreading laughter wherever he goes. The Hickmans are overjoyed to see their child happy once more. They extend their heartfelt gratitude to Dr. Lee and the CHRISTUS Children’s team for their care and support during their journey.
“Kaden’s nurses, doctors and the physical therapy team were amazing,” said Ashlee. “They were always quick to address our concerns and made sure our needs were met. Dr. Lee’s support was incredible. He answered our questions and reassured us when we needed it the most. The level of compassion and care from everyone involved was remarkable. Thanks to them, Kaden now has a fresh start in life.”
Learn more about the remarkable work being done at CHRISTUS Children’s Neurosciences Center by visiting our website. Read more inspiring stories about children and families who are forever grateful for the caring compassionate teams at CHRISTUS Children’s.