Back from Near-Death
No one could have known that day how 10-year-old Charnira Berry’s life would be dramatically altered—or just how close she would come to struggling for survival. Her family was getting ready to go out, and while her father and siblings bustled around her, Charnira remained on the couch, sleeping. When her family was unable to rouse her, they realized something was seriously wrong. Charnira had suffered a heart attack. By the time the ambulance arrived, she had sustained an anoxic brain injury, due to a lack of oxygen to the brain. At the hospital, she was non-responsive and needed advanced cardiac life support. Doctors told her family she would likely remain in a vegetative state for the rest of her life.
“They pretty much gave up on her,” remembers her mother, Karen Earle. “They didn’t expect her to make it; they wanted to pull the plug.”
But Charnira’s family wasn’t giving up. They sought a second opinion at another hospital, where doctors treated Charnira’s underlying heart condition—she had been born premature and had open heart surgery as an infant—and referred her to the Brain Injury Unit at Kennedy Krieger Institute, which specializes in increasing the responsiveness of patients who are in a minimally conscious or vegetative state due to acquired or traumatic brain injury.
“It’s not uncommon for patients in Charnira’s condition to have gotten a very poor prognosis,” says Beth Slomine, a neuropsychologist who co-directs the interdisciplinary responsiveness program, along with behavioral psychologist Adrianna Amari and pediatric rehabilitation physician Stacy Suskauer.
“It takes a careful approach. If you're not watching closely, you might miss subtle signs of responsiveness, and if that happens, patients may not get the rehabilitation they need."
–Beth Slomine, neuropsychologist
Subtle Signs of Responsiveness
Charnira’s brain injury was severe, affecting the critical subcortical regions that are responsible for so many functions—the brain’s “railroad stations,” as Dr. Suskauer puts it. The team had their work cut out for them.
“When patients are admitted, we look very closely for evidence of responses to the environment,” says Dr. Slomine.
This proved extremely difficult in Charnira’s case, because when she arrived she was heavily sedated by numerous medications to manage her near-constant muscle spasms and seizures. She needed to be carefully weaned off the drugs that might be impairing her responsiveness, without causing increased spasms or seizures. “It was really critical that we find the right combination of medications,” says Dr. Suskauer.
For patients like Charnira, specialists use a unique three-tiered approach of medication management, assessment of sleep cycles and responsiveness, and identification of stimuli that promote responding.
The team asked the family to identify sights, sounds, or smells that Charnira might respond to. Behavioral psychologists experimented with different stimuli and tracked the results. Charnira responded best to voices of her family, so a recording of their voices was incorporated into her therapy.
Her daughter first showed progress after about two months, says her mother. She noticed Charnira was reading the captions on TV. And she was able to nod her head in response to a question.
Over the course of her intensive treatment, Charnira began emerging into a more conscious state. She was able to consistently interact with her environment and the people around her, and learned to communicate with a voice output device.
A World Away from Where She Started
After several months of inpatient rehabilitation, Charnira was stable enough to return home. Earle says the staff helped with the transition by showing her how to help her daughter get out of bed and into her wheelchair, and visiting their home to make sure Charnira could safely get in and out of the house. Charnira continued her therapy in the Institute’s therapeutic day program, which helps transition patients who are undergoing intensive neurorehabilitation back into their home, community, and school life. Now 15, Charnira attends school at Kennedy Krieger and can walk with a walker, stand on her own, and speak a few words.
“She’s always smiling, always happy,” says Earle of her daughter, who is known for her pretty smile and positive attitude. “She can go to the edge of her wheelchair, plant her feet on the floor, and stand up. If she gets close enough, she can get out of her wheelchair and onto her bed. That progress came while she was at Kennedy Krieger.”
While Dr. Suskauer notes that not every patient has an outcome like Charnira’s, “Given her injuries, we were proud of the progress she made. She stands out as someone for whom there were really clear benefits of working together as a team.”
Her family could not agree more. “I am so appreciative of Kennedy Krieger,” says Earle. “They went above and beyond for Charnira.”