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National Advisory Board of The Sarah Jane Brain Foundation (page 1 of 6) Page 1 of 6
Foreword
By Sarah Jane Donohue
When I was only five days old, the baby nurse my parents hired to help them in my first two months of life shook me so hard, she broke three ribs, both collarbones and caused a severe brain injury. While I lay helpless for over a week, the monster told no one. I was unable to cry, became very lethargic and was finally brought back to the hospital where I was born healthy just two weeks earlier. The monster quickly confessed to her crime and my family was left dealing with the fact that I would never be the same child again.
While being discharged from the hospital several weeks later, the pediatric neurologist told my parents the injury was an eight on a scale of one to 10. When they asked, he said I would never be a normal child and I would probably never walk or talk. The correct answer by this doctor should have been, “I don’t know.” Fortunately for me, my Daddy doesn’t listen to bad doctors!
I was immediately enrolled in Early Intervention and began a rigorous therapy regimen that built up to physical, occupational, vision, feeding/speech therapies and special instruction — up to three hours of each therapy per week! When I was one year old my Daddy created a special crawler which allowed me to move independently. Then, for Christmas that year, he built me my very own walker and he even adapted it so I could walk on the treadmill!
My Daddy read as many books about neuroplasticity and neurology as he could handle (although I think some of the books he just skimmed because they were very complex). The more he read, the more he realized how little was known about the brain at all, let alone an infant’s brain. He also realized there was no single repository of information about neurological breakthroughs or discoveries – it is an extremely fractured field. It reminded him of the computer science industry the 1950s and 1960s, where brilliant people were working all over the world in the same areas, but no one knew specifically what anyone else was doing.
He took that idea and then asked himself, “Where are all the breakthroughs occurring today?” The answer was in Open Source Principles, which is basically the concept of shared knowledge. Since no one was using those principles in the field of neuroscience, Daddy decided to do it himself. He launched The Sarah Jane Brain Project in October 2007, and Phase One entailed putting all of my medical records and videos of my therapy sessions online in an Open Source format – the first time in medical history this had ever been done for anyone.
Phase Two of the Sarah Jane Brain Project involved recruiting other families of children like me who have brain injuries to participate, since the more of us who gather together, the stronger we are. During this phase, he also began to recruit the best in the field of pediatric acquired brain injury to help him develop the first-ever National Pediatric Acquired Brain Injury Plan (PABI Plan). Every family affected by brain injury my Daddy has ever connected with talked about having to reinvent the wheel in learning how to perform basic care and receive basic services for their child instead of being able to focus on the uniqueness of their child’s specific issues.
Phase Three consisted of having the Working Group of the National Advisory Board of the Sarah Jane Brain Foundation develop the first draft of the National PABI Plan. This document is designed to outline a comprehensive continuum of care, from prevention of pediatric brain injuries to acute medical care to reintegration and rehabilitation in the community and transition into adult systems.
Phase Four involves fully funding and implementing the National PABI Plan across the country. My Daddy promised to begin Phase Four before my fourth birthday on June 5, 2009, and he has. While I still cannot talk or walk on my own yet, my Daddy has taught me his philosophy in life, “Things work out best for those who make the best out of the way things work out!” I cannot begin to thank the National Advisory Board enough for being my voice and the voice of the millions of children and young adults around the country who suffer from pediatric acquired brain injury. Someday I will thank each and every one of you myself with my own voice! Until then, please keep talking for me.
Preface
Brain injury is the #1 leading cause of death and disability in the United States for children, adolescents and young adults. Particularly because their brains are still developing, it can result in wide-spread impairments and dysfunction not only in cognition and motor function but also in behavior and social function. The injury can also affect the developmental trajectory which in itself can increase dysfunction or exacerbate impairment. A developing child/young adult’s recovery, rehabilitation and habilitation from a brain injury is a complex process influenced by premorbid child and social environmental characteristics, acute monitoring and treatment, and the responses of family, school, and community during this process. As such, it requires a coordinated interdisciplinary response to facilitate long-term rehabilitation.
The Sarah Jane Brain Project (SJBP) recognizes many of the practices described in this document are currently being implemented. It is the purpose of this document to build on the many individualized practices that exist. However, the consistent availability, coordination and integration of the numerous well-established interventions, programs, and supports do not exist at the present time on a national level. The mission of the Sarah Jane Brain Project is to develop a seamless, standardized, evidence-based system of care universally accessible for all children/young adults and their families regardless of where they live in the nation. This system of care is called the National Pediatric Acquired Brain Injury Plan (PABI Plan). The Sarah Jane Brain Project will facilitate this integration along with ongoing development of effective interventions and supports, and their validation through research guided by theory, existing data across disability populations, and participant needs.
From the National Advisory Board of The Sarah Jane Brain Foundation. Used with permission. www.thebrainproject.org.
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