Posted on Nov 24,2017
"Your child is on the way to the hospital."
It’s a call no parent wants to receive from a school, but for 13-year-old Christina’s parents, it suddenly became reality.
Nearly a year ago, Christina experienced a grand mal seizure related to epilepsy during what should have been a normal school day. As an active teen participating in soccer and swimming, making YouTube videos and drumming in the church band, it was a completely unexpected turn of events.
Rushed to a nearby hospital, she went through numerous tests. The results, however, were inconclusive. In a last attempt to find any possible answer, Christina had an MRI. This time, there was something–a tumor on her brain.
Brain cells communicate with each other through electrical and chemical signals, and seizures result from a disruption of this activity. Tumors and other developmental abnormalities, injury, infection or genetic syndromes are some of the things that impact brain activity. This also affects what type of seizure a person may experience. There are several different types of seizures, classified by how they start and what symptoms manifest.
Every time the phone rang we didn’t know if it was going to be about Christina,” explains her dad, Shaji.
The initial diagnosis was just the tip of the iceberg. Soon after, Christina began to frequently have focal seizures, which affect only part of the brain and show few symptoms. About once a month, she would experience a grand mal seizure, which affects the entire body and causes a loss of consciousness. Christina also developed a limp when walking as a result of the tumor and she had to stop participating in sports.
The uncertainty of not knowing when the next episode would happen filled the next eight months with anxiety.
“Every time the phone rang we didn’t know if it was going to be about Christina,” explains her dad, Shaji.
To try to control the seizures, Christina was placed on a variety of medications. Some helped a little, others didn’t work well for her. Regardless, it wasn’t enough, prompting her family to seek a second opinion.
And a third opinion.
And a fourth.
No one in the South Florida area was willing to do the delicate, and quite possibly dangerous, surgery needed to remove the tumor in Christina’s brain.
Then, her mom, Elizabeth, heard of a neurosurgeon just hours away in St. Petersburg known for taking on challenging cases. She started online researching the Johns Hopkins All Children’s Institute for Brain Protection Sciences and the neurosurgery team led by George Jallo, M.D. Hopeful, Elizabeth made the call to set up a consultation.
After hearing Christina’s case, Jallo agreed to perform the precarious surgery and Jennifer Avallone, D.O., a pediatric neurologist at Johns Hopkins All Children’s Hospital, joined the team that would be caring for her over the following months.
Christina’s procedure was set for late August 2017. It took two surgeries, over the course of two days, to completely remove the tumor. Though the surgery was successful, Christina would still need months of recovery including physical therapy to help her regain her strength and visits with Jallo and Avallone to check on her progress.
She has been seizure-free since the surgery and recently celebrated her last outpatient physical therapy session. Christina still needs to take some medication, but the goal is for her eventually to be medication free.
The road to recovery can be a challenging one for any family and being far from home adds a new dimension to the struggle. Fortunately, her family was able to stay close by in one of the on-campus Ronald McDonald Houses during the several month-long period. Christina and her sister were able to keep up with their schoolwork with support from the Patient Academic Services, a team of full-time teachers at Johns Hopkins All Children’s.
Although it took nearly a year, Christina finally has her life back. Today, to any outside observer, she could be any average teen–a little shy, but with a smile that can light up a room. A testament to her resilience and the care and compassion that helped her triumph through adversity.
Johns Hopkins All Children's Neurosurgery
The Pediatric Neurosurgery Program at All Children's Hospital Johns Hopkins Medicine is one of the largest in the Southeast and provides comprehensive pediatric neurosurgery care for patients throughout Florida. Our inpatient Neuroscience & Surgery Unit has 28 individual patient rooms. For enhanced continuity of care and follow-up, we see patients in our main facility and also at Johns Hopkins All Children's Outpatient Care locations in Tampa, Brandon, Lakeland and Ft. Myers.