Each year in the U.S., 765,000 American youths, about one every 40 seconds, visit an emergency room for a traumatic brain injury (TBI). Compounding this complex diagnosis, families have to navigate an
often-frustrating maze to access health care or discover the lack thereof. “Whether you are prince or a pauper, you face the same struggle across the U.S.,” says Patrick Donohue, founder of The Sarah Jane Brain Project (SJBP).
Donahue knows the challenges parents face firsthand. The Sara Jane Brain Project is named after his daughter, Sarah Jane, who at 5 days old was shaken by her baby nurse, breaking four ribs and both collarbones and resulting in severe pediatric acquired brain injury (PABI). From the outset, Donahue became harshly aware of what families of children with brain injuries contend with—an uncoordinated system of care, a medical issue with minimal research dollars, and haphazard treatment options.
Brain injury diagnoses are categorized as mild, moderate, or severe, and can be traumatic or non traumatic in nature, with varied causes—combat-related, stroke, meningitis, substance use, accidents, abuse, or sports-related concussions. Regardless of the cause of a TBI, Donahue explains that 98% of the post-care TBI issues are the same. “Once you get past the prevention phase to acute phase issues, it’s all very similar. A family who has a 16-year-old who developed TBI from a skateboarding injury is stuck in the same system of care that I am in with Sarah Jane,” he says.
In late January, the SJBP launched a 40 + state nationwide Brain Injury Tour, which began in North Carolina at the NHL All-Star weekend. The tour has moved through high schools from Chicago to Minnesota, presenting to student athletes and coaches the foundation’s concussion prevention and awareness program “Concussions and You, On and Off the Field.” They have also held numerous town hall meetings in community settings such as Rainbow Babies and Children’s Hospital in Cleveland, bringing together health care practitioners to discuss treatment options. The foundation’s efforts are broad sweeping, with a focus on promoting public awareness, prevention, and treatment of PABI and
sports-related concussions in youths.
Back on the home front, the Sarah Jane Brain Project (SJBP) is leading the way for a standardized evidence-based system of care through the formulation of their National PABI Plan. In the months after Sarah Jane’s injury, Donahue became interested in models of open-source knowledge, common in the computer world, and how such models can further research and treatment for pediatric brain injuries. ”When we started this journey, I found so many dedicated professionals were doing important work, but independently of each other. We know so little about the brain, I wanted to know how we could bring this knowledge together into a coordinated resource,” says Donahue.
In a leap of faith to advocate for his daughter’s needs, Donahue posted Sarah Jane’s medical records on line to generate greater clinical and research support for her care, a first in medical history. The HIPAA privacy laws would normally not allow this, but as a parent advocate, Donahue was able to do so for his own daughter. The aim is to push the field of pediatric brain injury forward “50 years in 5 years” as it says on the SJBP website. ”I started hearing from people from all over the world who supported what we were doing,” says Donahue. “It has broken down barriers in terms of the questions that researchers can ask. I am an impatient person when it comes to helping my daughter.” Donahue also notes that the PABI plan is family- centered. “TBI is a condition that affects a lot of people; it affects the siblings, parents and extended family members, and any one who is a caregiver,” he says.
The foundation’s work has also generated attention on the global front. This past March, Donahue was the keynote speaker on establishing an international PABI plan at the 16th Convention of Academia Eurasiana Neurochirurgica in Mumbai, India, a conference gathering of top neurosurgeons from around the world.
Sarah Jane, now 5, continues on her own journey alongside her dad. She attends Standing Tall, a specialized school for children with disabilities. Known as the “diva” among her therapists, Sarah Jane loves to play on the swing, loves fresh foods, and is up to 22 minutes on the treadmill with adaptive support. Donahue is tireless with the work of the foundation. I asked him what keeps him going, “Sarah Jane works her tail off. I draw strength from her; it gets me up and drives me every day, and as her parent it is my job to do what I am doing.”