January 26, 2015.
Pediatric Brain Center provides holistic care for patients’ full range of brain-related needs.
By Kathleen Masterson, UC San Francisco
Fifteen-year-old Audrey Price slowly reaches for an orange plastic cup sitting on the counter. In a concerted effort, her fingers close around it, and she lifts it to chest height, shaking ever so slightly.
For Audrey, this simple act marks a tremendous journey from diagnosis to brain surgery to therapy and slow healing.
Just 11 months ago, she was living a typical middle-schooler’s life in a Bay Area suburb, hanging out with friends, playing tennis and obsessing over the British boy band, One Direction.
Then Audrey began developing weakness in her right side. After a series of doctor’s appointments, she ended up visiting a neurologist, who ordered scans of her brain that showed an aneurysm the size of a golf ball pressing on her brain stem.
That’s when her neurologist called UC San Francisco.
Audrey was brought into the newly formed Pediatric Brain Center at the UCSF Benioff Children’s Hospital San Francisco, which integrates neurology, neurosurgery, physical and occupational therapy, speech, social work and neuro-psychology to provide seamless holistic care for patients’ full range of brain-related needs. It’s one of just a few specialized pediatric brain centers in the U.S.
The center’s unique structure and specializations ended up being an ideal match for Audrey’s rare and complex condition.
Heather Fullerton and Nalin Gupta lead UC San Francisco's Pediatric Brain Center, which opens a new, centralized location at the new UCSF Benioff Children's Hospital at Mission Bay on Feb. 1. (Photo by Cindy Chew)
Bringing the doctors to the patient
The Pediatric Brain Center was founded about two years ago, spearheaded by Heather Fullerton, M.D., and Nalin Gupta, M.D. The center brings together a diverse range of UCSF experts from across multiple departments to treat patients together, as a team.
Rather than the typical experience in which a patient may see one doctor and then be referred to another specialist, and then another, chasing multiple appointments over weeks, at the Pediatric Brain Center the physicians, nurses and other key staff coordinate the care around the patient. One coordinator books all the patient’s appointments, from check-ups to arranging tests to surgery, and each patient is treated by a team assembled specifically to meet his or her unique medical needs.
“The goal was to make not only the patient experience, but also the problem solving and treatment, more rational. We wanted to be able to design our care around the patient’s medical issue, as opposed to simply following the organizational structure of the institution,” said Gupta.
Initially the center existed mainly as an organization change, with all the experts still located in separate offices at Parnassus. With the Feb. 1 opening of the UCSF Medical Center at Mission Bay, the Pediatric Brain Center will soon have it’s own central location to further streamline the patient experience.
“It’s so much easier for the family to have one place to go for all their child’s care, all the way from the initial treatment to rehabilitation,” said Fullerton.
Unique expertise in research and care
Having a centralized space will help make the patient experience smoother, but the crux of the Pediatric Brain Center is its network of highly specialized researchers, clinicians and surgeons.
“Having clinicians and researchers together helps inform what we study,” said Fullerton, a practicing neurologist who also researches pediatric strokes. “So many of our clinicians are also researchers, so when a question comes up in clinic, we can use our own local expertise to start the search for an answer. For example if I keep seeing this strange-looking blood vessel, I can turn around and start a study to investigate what’s happening.”
That’s a distinct advantage of an academic medical center. Private practices couldn’t afford the freedom to develop deep expertise in narrow areas, said Gupta. Furthermore, a child’s brain isn’t like the adult brain; treating a growing brain requires specialized neurology expertise.
“With the Pediatric Brain Center, we’re explicitly trying to leverage the strengths of the institution,” said Gupta. “We have people that have lot of expertise in narrow areas, and by definition those are often rare things.”
Building a specialized team
The Pediatric Brain Center brings all these diverse experts together, forming a unique treatment team made up of specialists relevant to each patient’s needs.
That’s vital for patients like Audrey, said Gupta.
“What Audrey had was very rare and complex. She’s an example of type of patient that there isn’t a list of 500 patients like that,” he said. “It’s not like other conditions where we could simply look to see what did we do for last 500.”
So Audrey’s doctors assembled a team of neurologists and neurosurgeons to develop a plan to remove the brain aneurysm.
“Audrey’s surgical team in consultation was so calm, they really explained things really well in terms we understood,” said her mother, Barbara Price. “We left there feeling very relieved this was treatable, that we were not in emergency situation and we had one of best surgical teams in the world that would treat her.”
Audrey’s surgery went well, and the team was able to remove the brain aneurism safely.
However, when she came out of surgery, she could hardly move the right side of her body. Her doctors quickly called in another team member, Jonathan Bixby, M.D., who specializes in physical rehabilitation.
“Unlike some other aspects of medicine, rehabilitation is dependent on how much effort the patient puts in,” said Bixby.
“Audrey was great. With any patient dealing with significant changes to the body, there can be issues adjusting. Audrey adjusted quickly, and was very willing to work with a therapist.”
Ongoing team care
Audrey is continuing to get stronger every day. She does her physical therapy daily at home, has learned to do nearly everything with her left hand and was able to start high school last fall.
She got there after spending six weeks living at the hospital after her surgery; she practiced physical therapy six hours a day, six days a week. It’s exhausting work, but her therapists strived to incorporate Audrey’s interests into her exercises to make it more fun, including using therapy dogs and playing One Direction’s music during sessions.
“The hardest part is not knowing when my body is going to be back to the way it was,” she said. “The doctors said, ‘all brains are different,’ and that was the most frustrating part.”
Throughout her hospital stay, her bed was covered in a fleece blanket with the One Direction’s faces on it, including her favorite singer, Niall.
Barbara Price recalled that one day Audrey came back to her room to find a note atop her One Direction blanket that read something like: “‘Dear Audrey, I’m really proud of all the hard work you’re doing’ then the note quoted lyrics from one of the songs. It was signed, ‘Love, Niall,” she said with a laugh. One of the doctors had scripted this joking note of encouragement.
“The team was so funny and thoughtful, so we had a lot of laughs that got us through some tough times.”
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