Bella’s Story: Introducing Deep Brain Stimulation (DBS) for Pediatric Epilepsy

Bella was born with cerebral palsy, so she has always had to navigate health challenges — and thrive anyway. She’s learned to walk with assistance, to communicate in her own expressive way, and to embrace every moment with her tight-knit family. Her parents, Chris and Jaime, have focused on giving her and her older sister a life full of joy and adventure.

“You get one spin, right?” says Chris. “Spin it to win it.”

For the past three years, though, Bella’s bright life has been clouded by seizures. At first, they didn’t even seem like seizures — just a flutter of her eyes, a brief freeze mid-sentence. But they kept happening. At Connecticut Children’s, Bella was diagnosed with Lennox-Gastaut Syndrome (LGS), an especially difficult-to-treat form of epilepsy that typically begins in childhood. By middle school, she was having as many as five seizures a day.

Unpredictable daily seizures take a huge toll: Every moment becomes a matter of safety. You can’t go on vacation without worrying that there’s a qualified hospital nearby. You can’t go on a walk alone. You can’t sit in a hard chair without worrying about falling.

On top of that, LGS comes with an even heavier burden: The seizures themselves can interfere with learning.

“LGS affects not only seizure control but learning and quality of life,” explains Lila Worden, MD, Bella’s neurologist at Connecticut Children’s. “And for this type of epilepsy, medications aren’t always effective. Sometimes they come with significant side effects, too.”

Unfortunately, that was the case for Bella. “None of the medications we tried really worked,” Chris says. “And Bella just didn’t feel like herself.”

But when medical options for epilepsy fall short, experts are finding that surgical options — like DBS — can make a difference.
 

Deep brain stimulation (DBS) is already widely used for adults with conditions like Parkinson’s disease and tremor. Each year, researchers are adding new uses to the list, like for obsessive-compulsive disorder, dystonia and depression.

For epilepsy, DBS has been shown to reduce the frequency and severity of seizures by 50 to 70 percent over time — a life-changing difference for kids like Bella.

“It’s not a cure,” says Dr. Worden, “but even a 50 percent reduction means fewer falls. More seizure-free days. More time just being a kid.”

Still, many families don’t know about DBS, or how to see if it’s right for their child. Despite strong evidence of its safety and efficacy, DBS is technically considered “off-label” for patients under 18 — which means it can be hard to access.

For all these reasons, pediatric neurosurgeon David Hersh, MD, had long envisioned a DBS program for Connecticut Children’s.

“For patients like Bella who have failed multiple medications and where we can’t pinpoint the seizures to a specific region of the brain, DBS becomes a really important option,” Dr. Hersh says. “We wanted to be able to offer that at Connecticut Children’s, to give families the full spectrum of surgical options for epilepsy.”

He knew it would take an immense amount of work to get a DBS program up and running — that didn’t intimidate him. He also knew it would take a partner with extensive DBS experience. That’s when UConn Health’s Christopher Conner, MD, entered the picture.

As a fellowship-trained functional neurosurgeon, Dr. Conner specializes in surgical techniques like DBS; he trained with one of the world’s premier functional neurosurgeons. A few years ago, he arrived at UConn Health with a plan to bring the treatment to Connecticut’s adult population. He hadn’t expected the chance to bring it to kids — until he met Dr. Hersh.

“One day we were at a department meeting, and this nice guy from Connecticut Children’s introduced himself,” Dr. Conner recalls. “He said, ‘Want to do DBS in kids?’ And I said yes.”
 

DBS treatment begins with a surgery to implant two electrodes deep in a patient’s brain. These electrodes connect to a small device in the chest that sends electrical signals to help regulate the brain’s activity. It works a bit like a pacemaker — except instead of targeting the heart, it targets the brain, in this case to reduce seizures. From that point on, a patient’s follow-up care involves routine, typically non-invasive visits where their neurologist simply monitors and adjusts their device settings.

When Dr. Hersh introduced the idea to Bella’s family, he walked them through every detail. He was upfront: While Dr. Conner had done many of these procedures, this would be the first as part of the Connecticut Children’s team.

Chris and Jamie did their own research. They weighed the risks and possibilities. They thought about the team they’d come to know over Bella’s years at Connecticut Children’s.

“You’re not picking Coke or Pepsi with your dinner — you’re picking brain surgery,” Chris says. “But we trusted the team. We asked, ‘If this were your daughter, what would you do?’ And they gave us honest, detailed answers. They believed it could help Bella. We believed in them.”

Behind the scenes, the team got to work. Equipment was transferred from UConn. Connecticut Children’s surgical staff was trained on DBS protocols. The OR team even held dress rehearsals.

“We practiced everything — every handoff, every movement,” says Dr. Conner. “By the time we were in the room with Bella, it didn’t look like the first time. It looked like the twentieth.”

“It was a huge team effort,” Dr. Hersh agrees. “Anesthesiology, neurology, surgical techs, nursing, the device manufacturer — everyone came together.”

In December, Bella became the first pediatric patient to receive DBS at Connecticut Children’s. Just a few days later, another child followed. The program had begun.

Bella is still in the early stages of treatment. At regular neurology follow-ups, Dr. Worden gradually increases the settings on her DBS device — a process that takes 12 months or longer to reach full effect.

But already, the difference is noticeable.

“Every bit of improvement means more good days,” Dr. Worden says. “For a child with epilepsy, that means the world.”

Bella’s had fewer seizures, and they’re less severe. Simply being able to ease off some of her anti-seizure medications has been a relief, bringing her personality back to its full shine. She’s the kind of kid who hugs every “Mimi” she sees at her sister’s lacrosse game, assuming every grandma in the stands could use a little love.

“She’s the single purest human you’ll ever meet,” Chris says. “She makes us all better.”

And now, Bella has a new title: pioneer. As the first DBS patient at Connecticut Children’s, she’s opened the door for other children with drug-resistant epilepsy to find relief.

That’s the promise of this treatment — and the reason Connecticut Children’s and UConn Health came together to build a pediatric DBS program.

“Now we can say we’ve done it, and we can do it safely,” says Dr. Conner. “For kids like Bella, that changes everything.”