{"id":233336,"date":"2025-07-31T18:01:57","date_gmt":"2025-07-31T22:01:57","guid":{"rendered":"https:\/\/today.uconn.edu\/?p=233336"},"modified":"2025-07-31T18:01:57","modified_gmt":"2025-07-31T22:01:57","slug":"connecticuts-first-pediatric-dbs-for-epilepsy-a-new-era-in-care","status":"publish","type":"post","link":"https:\/\/today.uconn.edu\/2025\/07\/connecticuts-first-pediatric-dbs-for-epilepsy-a-new-era-in-care\/","title":{"rendered":"Connecticut\u2019s First Pediatric DBS for Epilepsy: A New Era in Care"},"content":{"rendered":"
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Isabella has always been a joyful kid \u2014 bright-eyed, full of curiosity, and completely herself. But since age 10, she has also been living with the fear and danger of a hard-to-treat form of epilepsy, sometimes having more than five seizures a day.<\/p>\n<\/div>\n<\/div>\n<\/div>\n

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A partnership between Connecticut Children\u2019s and UConn Health is working to change that. Together, the health systems now offer deep brain stimulation (DBS) for pediatric epilepsy. Several months ago, Bella became the first patient to have the surgery at Connecticut Children\u2019s.<\/p>\n

It marked a milestone for pediatric health care in Connecticut. For families and children facing treatment-resistant epilepsy, it marked something even bigger: hope.<\/p>\n

\u201cWe want nothing more than a world where Bella doesn\u2019t have seizures,\u201d her dad says. \u201cAnd we believe in the people who can help us get there.\u201d<\/p>\n

A rare and relentless diagnosis<\/h3>\n<\/div>\n<\/section>\n<\/div>\n<\/div>\n
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Bella was born with\u00a0cerebral palsy, so she has always had to navigate health challenges \u2014 and thrive anyway. She\u2019s 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.<\/p>\n

\u201cYou get one spin, right?\u201d says Chris. \u201cSpin it to win it.\u201d<\/p>\n

For the past three years, though, Bella\u2019s bright life has been clouded by seizures. At first, they didn\u2019t even seem like seizures \u2014 just a flutter of her eyes, a brief freeze mid-sentence. But they kept happening. At Connecticut Children\u2019s, 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.<\/p>\n

Unpredictable daily seizures take a huge toll: Every moment becomes a matter of safety. You can\u2019t go on vacation without worrying that there\u2019s a qualified hospital nearby. You can\u2019t go on a walk alone. You can\u2019t sit in a hard chair without worrying about falling.<\/p>\n

\"Bella
Bella and Dr. Lila Worden, Connecticut Children’s (photo credit: Connecticut Children’s)<\/figcaption><\/figure>\n

On top of that, LGS comes with an even heavier burden: The seizures themselves can interfere with learning.<\/p>\n

\u201cLGS affects not only seizure control but learning and quality of life,\u201d explains\u00a0Lila Worden, MD,<\/a>\u00a0Bella\u2019s neurologist at Connecticut Children\u2019s. \u201cAnd for this type of epilepsy, medications aren\u2019t always effective. Sometimes they come with significant side effects, too.\u201d<\/p>\n

Unfortunately, that was the case for Bella. \u201cNone of the medications we tried really worked,\u201d Chris says. \u201cAnd Bella just didn\u2019t feel like herself.\u201d<\/p>\n

But when medical options for epilepsy fall short, experts are finding that surgical options \u2014 like DBS \u2014 can make a difference.<\/p>\n

A groundbreaking option for kids with epilepsy<\/h3>\n<\/div>\n<\/div>\n<\/div>\n
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Deep brain stimulation (DBS) is already widely used for adults with conditions like Parkinson\u2019s disease and tremor. Each year, researchers are adding new uses to the list, like for obsessive-compulsive disorder, dystonia and depression.<\/p>\n

For epilepsy, DBS has been shown to reduce the frequency and severity of seizures by 50 to 70 percent over time \u2014 a life-changing difference for kids like Bella.<\/p>\n

\u201cIt\u2019s not a cure,\u201d says Worden, \u201cbut even a 50 percent reduction means fewer falls. More seizure-free days. More time just being a kid.\u201d<\/p>\n

Still, many families don\u2019t know about DBS, or how to see if it\u2019s right for their child. Despite strong evidence of its safety and efficacy, DBS is technically considered \u201coff-label\u201d for patients under 18 \u2014 which means it can be hard to access.<\/p>\n

For all these reasons, pediatric neurosurgeon\u00a0David Hersh, MD<\/a>, had long envisioned a DBS program for Connecticut Children\u2019s.<\/p>\n

\u201cFor patients like Bella who have failed multiple medications and where we can\u2019t pinpoint the seizures to a specific region of the brain, DBS becomes a really important option,\u201d Hersh says. \u201cWe wanted to be able to offer that at Connecticut Children\u2019s, to give families the full spectrum of surgical options for epilepsy.\u201d<\/p>\n

\"Dr.
Dr. Chris Conner, UConn Health with Bella (photo credit: Connecticut Children’s)<\/figcaption><\/figure>\n

He knew it would take an immense amount of work to get a DBS program up and running \u2014 that didn\u2019t intimidate him. He also knew it would take a partner with extensive DBS experience. That\u2019s when UConn Health\u2019s\u00a0Christopher Conner, MD<\/a>, entered the picture.<\/p>\n

As a fellowship-trained functional neurosurgeon, Dr. Conner specializes in surgical techniques like DBS; he trained with one of the world\u2019s premier functional neurosurgeons. A few years ago, he arrived at UConn Health with a plan to bring the treatment to Connecticut\u2019s adult population. He hadn\u2019t expected the chance to bring it to kids \u2014 until he met Dr. Hersh.<\/p>\n

\u201cOne day we were at a department meeting, and this nice guy from Connecticut Children\u2019s introduced himself,\u201d Conner recalls. \u201cHe said, \u2018Want to do DBS in kids?\u2019 And I said yes.\u201d\n<\/p><\/div>\n<\/div>\n<\/div>\n

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You\u2019re not picking Coke or Pepsi with your dinner \u2014 you\u2019re picking brain surgery. But we trusted the team. We asked, \u2018If this were your daughter, what would you do?\u2019\u00a0 Chris, Bella’s Dad<\/em><\/p><\/blockquote>\n<\/div>\n

Innovation, together<\/h3>\n<\/div>\n
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Neurosurgeons Dr. David Hersh, CT Children’s and Dr. Chris Conner, UConn Health perform DBS surgery.<\/figcaption><\/figure>\n

DBS treatment begins with a surgery to implant two electrodes deep in a patient\u2019s brain. These electrodes connect to a small device in the chest that sends electrical signals to help regulate the brain\u2019s activity. It works a bit like a pacemaker \u2014 except instead of targeting the heart, it targets the brain, in this case to reduce seizures. From that point on, a patient\u2019s follow-up care involves routine, typically non-invasive visits where their neurologist simply monitors and adjusts their device settings.<\/p>\n

When Hersh introduced the idea to Bella\u2019s family, he walked them through every detail. He was upfront: While Conner had done many of these procedures, this would be the first as part of the Connecticut Children\u2019s team.<\/p>\n

Chris and Jamie did their own research. They weighed the risks and possibilities. They thought about the team they\u2019d come to know over Bella\u2019s years at Connecticut Children\u2019s.<\/p>\n

\u201cYou\u2019re not picking Coke or Pepsi with your dinner \u2014 you\u2019re picking brain surgery,\u201d Chris says. \u201cBut we trusted the team. We asked, \u2018If this were your daughter, what would you do?\u2019 And they gave us honest, detailed answers. They believed it could help Bella. We believed in them.\u201d<\/p>\n

Behind the scenes, the team got to work. Equipment was transferred from UConn Health. Connecticut Children\u2019s surgical staff was trained on DBS protocols. The OR team even held dress rehearsals.<\/p>\n

\u201cWe practiced everything \u2014 every handoff, every movement,\u201d says Conner. \u201cBy the time we were in the room with Bella, it didn\u2019t look like the first time. It looked like the twentieth.\u201d<\/p>\n

\"Dr.
Bella, with Dr. David Hersh, Connecticut Childrens (photo credit: Connecticut Children’s)<\/figcaption><\/figure>\n

\u201cIt was a huge team effort,\u201d Hersh agrees. \u201cAnesthesiology, neurology, surgical techs, nursing, the device manufacturer \u2014 everyone came together.\u201d<\/p>\n

In December, Bella became the first pediatric patient to receive DBS at Connecticut Children\u2019s. Just a few days later, another child followed. The program had begun.<\/p>\n

Early signs of progress<\/h3>\n<\/div>\n<\/div>\n<\/div>\n
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Bella is still in the early stages of treatment. At regular neurology follow-ups, Dr. Worden gradually increases the settings on her DBS device \u2014 a process that takes 12 months or longer to reach full effect.<\/p>\n

But already, the difference is noticeable.<\/p>\n

\u201cEvery bit of improvement means more good days,\u201d Worden says. \u201cFor a child with epilepsy, that means the world.\u201d<\/p>\n

Bella\u2019s had fewer seizures, and they\u2019re 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\u2019s the kind of kid who hugs every \u201cMimi\u201d she sees at her sister\u2019s lacrosse game, assuming every grandma in the stands could use a little love.<\/p>\n

\u201cNow we can say we\u2019ve done it, and we can do it safely – for kids like Bella, that changes everything,\u201d Dr. Chris Conner,\u00a0 Neurosurgeon, UConn Health<\/em><\/p><\/blockquote>\n

\u201cShe\u2019s the single purest human you\u2019ll ever meet,\u201d Chris says. \u201cShe makes us all better.\u201d<\/p>\n

And now, Bella has a new title: pioneer. As the first DBS patient at Connecticut Children\u2019s, she\u2019s opened the door for other children with drug-resistant epilepsy to find relief.<\/p>\n

That\u2019s the promise of this treatment \u2014 and the reason Connecticut Children\u2019s and UConn Health came together to build a pediatric DBS program.<\/p>\n

\u201cNow we can say we\u2019ve done it, and we can do it safely,\u201d says Conner. \u201cFor kids like Bella, that changes everything.\u201d<\/p>\n