Asleep Deep Brain Stimulation Transforms Riley’s Life, Restoring Her Health and Independence

Riley Bridges, an active young girl from Kings Mountain, North Carolina, loves playing soccer, electronic gaming and joking around with her father, Terry. Her independence and lively spirit have always been at the heart of her vibrant personality.

At age 5, things rapidly began to change for Riley. She experienced a range of unexplainable symptoms that progressively worsened. After years of trying to manage her debilitating symptoms and improve her mobility, her trusted care team at Atrium Health determined she would need brain surgery to improve her chances of enjoying a healthy childhood.

To the delight of her parents and doctors, Riley experienced rapid improvement from asleep deep brain stimulation (DBS). This groundbreaking surgical technique sends electrical signals to the brain to control movement. Back to her spunky self, Riley is excited to continue her recovery and loves spending time with her family.

Mysterious, progressive symptoms

When Riley entered kindergarten, she began having mysterious health issues. It started with pain in her right foot, which progressed to toe walking.

Dr. Ashley Helseth, movement specialist in pediatric neurology at Atrium Health Levine Children’s Hospital (nationally ranked in pediatric neurology and neurosurgery by U.S. News & World Report), treated Riley’s tip-toe syndrome with therapy and foot braces. Despite these efforts, her condition worsened. Helseth conducted a series of tests and imaging to rule out an autoimmune condition, but all the results returned normal.

Over the next six months, Riley's muscle tone declined so severely that she struggled to hold her head up or speak clearly. At school, she could no longer carry her backpack or sit still in class. A few months later, she began to fall regularly and had increasing difficulty walking. At home, Riley could no longer sit at the dinner table, so she had to learn to eat lying down.

“You could see the frustration on her face,” Terry explains. “When she tried to eat, she couldn’t get the fork to her mouth. She’d drop it, and Kelly [Riley’s mother] would have to feed her. Riley hated that.”

By age 6, Riley developed choreoathetosis, which causes uncontrolled writhing movements and posturing. Despite treatments with antiseizure medications, muscle relaxants and immunotherapy, her condition did not improve, and her low muscle tone persisted. Riley also began experiencing tremors, an early sign of dystonia – a condition marked by abnormal, sustained twisting and postures.

Riley and her family explored all available treatment options. Ultimately, Riley’s care team determined she would benefit most from DBS.

Dystonic crisis and sedation

When Helseth saw 8-year-old Riley in spring 2023, she noticed signs of a dystonia attack. Riley’s back was arched, making her appear “twisted and uncomfortable.”

Just three days later, Riley’s parents brought her to Atrium Health Levine Children’s Jeff Gordon Children's Center due to pain in her back and feet. By that time, she was in a wheelchair, experiencing severe muscle contractions and a full-body arch. Her care team discovered fractures in her feet.

A week later, Riley’s care team transferred her to Levine Children’s Hospital, where she was admitted to the pediatric intensive care unit (PICU). Shortly after arriving at the hospital, Riley started having severe muscle spasms that lasted for seven hours. Her care team tried several medicines to bring her body under control, but nothing worked.

“Riley was folded up like a backward C,” recalls Terry. “Her muscles were so worked up like her entire body was in a muscle cramp.”

Terry remembers the support the family received from Riley’s nurse that night in the PICU.

“She was awesome!” Terry says. “She was there the whole time and tried everything to help Riley. Unfortunately, nothing worked.”

Riley’s care team placed her in a medically induced coma to relieve her pain and relax her muscles. However, when they tried to wean her off sedation, her painful dystonia returned. Unbeknownst to the Bridges, Riley’s hospital stay at Levine Children’s Hospital would last for 70 days.

Stimulating circuits deep in the brain

Riley had few treatment options left beyond palliative care. Unsure of Riley’s prospects for normal posturing and movement, Terry and Kelly were hopeful that Riley could wake up and return to playing games. Helseth proposed DBS, a treatment option recommended for a dystonic crisis that doesn’t respond to medications.

“I told Riley’s parents, ‘The procedure carries risk, but I think we can wake her up from this,’” recalls Helseth. “I was convinced that DBS was what she needed.”

Helseth consulted Dr. Danielle Englert, movement disorder neurologist, section chief and director of the DBS program at Atrium Health Neurosciences Institute, and Dr. Martin Henegar, neurosurgeon with Carolina NeuroSurgery & Spine Associates (CNSA). Helseth ordered a muscle biopsy to confirm that her symptoms were caused by a central nervous system disorder, which might respond to DBS.

Riley’s doctors hoped that stimulating circuits deep in her brain could reduce the abnormal activity causing her muscles to spasm. The DBS procedure involves drilling two burr holes into the skull to insert electrodes, which are connected to an extension wire leading to an implantable pulse generator. This pacemaker-like device, implanted in the chest, sends electrical signals to the brain.

Englert and Henegar targeted a region of Riley’s brain known to be effective for treating dystonia with DBS. Englert handled the surgical planning and helped confirm the placement of the electrodes. Englert and Henegar used an image-guided DBS system to deliver stimulation to Riley’s brain safely and efficiently. The image guidance proved especially helpful when Englert adjusted the stimulation while Riley was in a coma and unable to provide feedback.

Remarkable results and recovery

Within two weeks of activating Riley’s DBS system, her care team weaned her from sedation. When Englert went to check on Riley, she was surprised that she wasn’t in her room. Englert was amazed to find her hanging out on the hospital’s patio surrounded by family and friends. She was sitting up and had an 80% reduction in her dystonia symptoms.

This dramatic change occurred quickly for Riley. Englert noted that it typically takes three to six months to see relief from DBS treatment in patients with neurological conditions like Parkinson’s.

“Riley’s results are incredible,” Helseth explains. “We’ve weaned her off all dystonia medications, and her muscle control is almost normal. She now has much better head and voice control and can push herself out of her wheelchair. Most importantly, she smiles and laughs – something truly heartwarming.”

Independence and resilience

“We see such a big difference in our daughter,” notes Kelly. “She’s able to sit and do activities all by herself. She loves putting on makeup and playing games. Riley can join our family dinners and sit at the table like everyone else.”

Terry noticed how Riley got her attitude back. “We tease each other all the time – always in good humor,” he says. “Riley’s a fighter – she’s bound and determined not to let anything stop her.”

Riley regularly participates in physical, speech and occupational therapy at Atrium Health Cleveland Rehabilitation. Her care team’s primary goal is to help her regain the ability to walk while her speech continues to improve.

Kelly and Terry are deeply grateful for the life-changing DBS treatment and wholeheartedly recommend it to others. They’re excited to see Riley’s continued progress and hopeful she’ll return to school soon. Riley herself dreams of one day getting back on the soccer field.

Multidisciplinary team with advanced capabilities

Atrium Health is proud to offer the most experienced DBS surgical program in the Greater Charlotte region.

“With DBS, electrode placement surgery requires exceptional accuracy and precision,” explains Englert. “The more experience you have, the greater the precision – and, consequently, the better the outcomes. Our team has implanted nearly 500 DBS systems, making us a high-volume center for the procedure.”

“Status dystonicus is extremely rare – you might encounter just one case in a lifetime,” notes Helseth. “Fortunately, we could use DBS in a pediatric patient. When treating a child, you need the expertise of a high-level tertiary care center to ensure the procedure is done correctly.”

Additionally, the PICU team had the equipment and expertise needed to put Riley in a special type of coma designed to control intracranial pressure, suppressing her brain sufficiently so she could rest. The team monitored her brain activity using an electroencephalogram.

Riley’s surgery highlights Levine Children’s and Atrium Health Neurosciences Institute’s multidisciplinary approach to neurological care. Her surgical team included pediatric doctors and PICU specialists, adult DBS experts, neurosurgeons, physician assistants, DBS coordinators and product representatives.

“Our physicians really advocate for patients and ensure we have access to the latest medications and DBS technologies,” Helseth explains.

DBS surgery must be performed by a neurosurgeon with a neurologist present. While Riley's case was particularly challenging, Englert and Henegar brought their extensive experience as a team to the table.

Elevating neurological care

Before Riley’s case, doctors at Atrium Health Neurosciences Institute and CNSA performed DBS electrode placement on awake patients, allowing them to confirm precise targeting.

“Asleep DBS is particularly appealing to patients since it eliminates the need to be awake during brain surgery,” says Englert. “Intraoperative imaging enhances accuracy and safety, delivering outcomes equal to or even better than those achieved with awake DBS.”

“We now perform asleep DBS routinely in patients with Parkinson’s and other neurological conditions,” Henegar adds. “Riley’s ordeal and our successful intervention have benefited hundreds of other patients.”

Learn more about neurological and neurosurgical care at Atrium Health Neurosciences Institute. Learn more about pediatric care at Atrium Health Levine Children’s.