ROSA, surgeons help Hicksville teen overcome severe form of epilepsy

A team of neurosurgeons and a robot named ROSA have had a powerful impact on the life of a Hicksville teen who developed a severe form of epilepsy but now is looking forward to cheering on his favorite football team.

Louis Clappi, who celebrated his 14th birthday last week, had a case of the flu in late 2017 that initially seemed unremarkable to his family. It was the viral infection’s aftermath, however, that caused alarm, his parents said during a news briefing at Cohen Children’s Medical Center in New Hyde Park on Thursday.

“We called 911, and they brought him here to Cohen,” the boy’s mom, Jo-Ann Clappi, said as she recalled the tense moments when her  eldest son, John, 16, noticed Louis was overcome by seizures.

“They were sudden,” Jo-Ann Clappi added, noting that Louis had no history of seizures before the abrupt onset of the condition following his bout with the flu.

Robert Clappi, Louis’ dad, said his son has come a long way since that day when epilepsy unexpectedly intruded into his son’s life. He marveled at Louis’ progress and thanked the Cohen team for helping the teen regain his strength and confidence.

Louis, however, is taking his condition in stride, confident in his parents, his doctors — and the robot. “When my parents first told me about it, I was really scared,” Louis said, referring to the robot that would drill into his skull. “I didn’t want to do it. But I did it because I knew it was best for me and it would get me off my medicines and take my seizures away.”

While doctors can’t definitively explain why Louis developed epilepsy or why the condition emerged in one of the fiercest flu seasons in recent years, there was no denying that Louis developed an especially difficult case of neurological disorder.

Dr. Sanjeev Kothare, Cohen Children’s chief of pediatric neurosurgery, said Louis was put on a strict regimen of four anti-seizure medications. But for Louis, medications initially couldn’t harness the seizure disorder.   

“I quickly realized he had refractory epilepsy,” said Kothare, referring to a form of the disorder that is difficult to treat. Refractory epilepsy also is known as intractable epilepsy and drug resistant epilepsy.

Kothare further defined the boy’s condition as having roots in specific regions of his brain, centralized mostly in the 3-pound organ’s left hemisphere. Because of such specificity, the condition also is known as focal epilepsy.

“Focal epilepsy means that it is coming from one part of the brain. The majority of the seizures were coming from the left,” Kothare said, noting that a minor contributing region seemed to be localized on the right side.

Kothare recommended Louis to his colleague, pediatric neurosurgeon Dr. Shaun Rodgers, who helped bring ROSA, a 5-foot-tall surgical robot, to Cohen Children’s. The $1 million device is helping the Cohen team treat patients with debilitating seizures .

ROSA is a one-armed gender-less automaton equipped with a computer screen. The name is an acronym that means robotic stereotactic assistant.  

Without the robot, Louis would have had to endure a surgical procedure six to eight hours long and have much of his skull removed to allow Rodgers to reach brain regions spawning the seizures.

Instead, Louis was in the operating room just slightly more than an hour when Rodgers — and the robot — performed a delicate, minimally invasive procedure two weeks ago. Instruments attached to ROSA drilled fine bore holes into the boy’s head. Then, electrodes that were then connected to the robot were inserted into the teen’s brain to reach the exact source of his seizures.  

Louis still has a long road ahead as he and his doctors work toward conquering his form of epilepsy. Already, he is down to only two daily medications compared with the four he required not long ago.

“The precision and accuracy of it compares to nothing else we do,” said Rodgers who demonstrated how the device’s arm is operated by a pedal that he steps on in the surgical suite.

Rodgers formally had rehearsed every aspect of Louis’ procedure before it occurred. A 3D model of Louis’ head was made to the precise thickness of his skull in Northwell Health’s bioengineering laboratory. It was connected to ROSA, allowing Rodgers to practice each detail of the procedure before it happened.

He praised his young patient’s strength and gave Louis a bag of gifts from the Baltimore Ravens, the teen’s favorite football team.