Pediatric Chiari: Sophia’s Story

Pediatric neurosurgeon provides incredible care in child’s hometown

One day in early January, Nicole Whitaker noticed her daughter Sophia’s eyes were turning in. By the end of the day, Sophia, who was three days shy of turning 3 years old, was seeing double.

Nicole made an appointment to see an eye doctor right away. The examination revealed Sophia had alternating esotropia, a condition that causes someone to alternate their fixation on objects between each eye instead of using both eyes to focus.

Nicole wanted more answers and requested an MRI just to be sure there were no other underlying issues causing Sophia’s vision problems. The MRI revealed Sophia had a type 1 Chiari malformation.

The diagnosis led the Whitaker family to UF Health, where they met the chief of pediatric neurosurgery, Lance Governale, M.D. Based in Gainesville, UF Health has a pediatric specialties satellite office in Tallahassee, which was key for Sophia. Instead of having to travel more than two hours to see an expert pediatric neurosurgeon, the family had access to world-class care just around the corner. Pediatric neurosurgery also sees patients in Ocala, Lake City and Daytona.

“The first time we met Dr. Governale was here in Tallahassee,” Nicole said. “I think our appointment was scheduled for 30 minutes, but Dr. Governale sat with us for more than an hour. He told us that one of his main jobs was helping calm parents’ fears. He was so calm, sweet and knowledgeable during one of the most stressful times in my life.”

Nicole says that with a type 1 Chiari malformation, the bottom part of Sophia’s brain, called the cerebellum, is too big for her skull.

“During Sophia’s first appointment, Dr. Governale shared that the way the bones formed in Sophia’s skull made it too small for her brain,” Nicole said.

Although Chiari malformation can cause symptoms, the majority of cases are asymptomatic and require no treatment. In consultation with pediatric ophthalmology, Sophia’s care team determined that her condition did not appear to be causing her alternating esotropia. She would have eye surgery to correct her eye misalignment.

“Dr. Governale knew we were going to be speaking with an ophthalmologist. The day after our appointment, he personally called me to see how the appointment went,” Nicole said. “He called again to check on Sophia after her surgery. It’s amazing to have a doctor, especially a surgeon, who genuinely cares.”

Because some patients with Chiari malformation develop symptoms that lead to surgery, Governale is monitoring Sophia’s progression, and she is scheduled to have another MRI in three months. If symptoms do develop, he will likely need to remove part of the bottom of her skull in the back to make room for her brain. At that point, Governale and the Whitaker family will weigh the risks of the symptoms versus the risks of brain surgery.

Having UF Health Pediatric Specialties in Tallahassee has been very helpful to Nicole, but what has made the true difference is the care provided by Governale.

“We are just so blown away by him,” Nicole said. “I can’t think of many other doctors, especially neurosurgeons, who call to check on their patients personally. That has meant the world to us.”

Sophia on beach, full size