Two heads are better than one
When my son, Christopher, was first diagnosed with Shaken Baby Syndrome in 2006, the reporter in me immediately took to researching the issue. Initially, my search was for more information on the diagnosis itself so I might learn what to expect for him in the future.
However, the answers I found were all vague and wide-ranging. Basically, the bottom line was nobody knew what to expect. Brain injury is still such a mystery to even those who are experts in the field of pediatric neurology. Until now, family members of Pediatric Traumatic Brain Injury (PTBI) survivors have had to practice a “wait and see” approach with our surviving children… eliminating months and even years of time that could have been spent in more effective rehabilitation.
This year, I attended the Seventh North American Conference on Shaken Baby Syndrome in Vancouver, Canada from October 5-7. It was a truly amazing experience, meeting all the other affected families and getting to speak with the top medical and legal personnel in the fields of child abuse and SBS prevention. And yet, it was pretty much what I expected; I didn’t learn anything shocking or astoundingly new and progressive, except for about one thing… the Sarah Jane Brain Project.
Patrick Donohue’s daughter, Sarah Jane, was shaken by her baby nurse when she was just five days old. She lived, but like so many other SBS survivors, the results were devastating. You may have seen Sarah Jane’s story on The Today Show, Good Morning American or CNN several years ago. Today at three years old Sarah Jane cannot walk, talk, crawl or even sit up on her own. However, her father, Patrick, was determined to learn more about PTBI in an effort to help Sarah Jane as much as possible.
A year ago, Patrick started the Sarah Jane Brain Foundation. The name might sound pretty non-descript, but it’s a really ingenious idea. Patrick took all of Sarah Jane’s medical records, videos of her therapy sessions, daily schedule, and everything else having to do with her injury and subsequent rehabilitation, and he put it online for the world to see. The purpose behind this move was a hope that in doing so, professionals in every medical or therapeutic field around the world might stumble across the website (http://www.TheBrainProject.org) and see something that could be adjusted to help Sarah Jane more. The results have been tremendous – he has attracted the top research, medical and other professionals in the field of pediatric brain injury to his National Advisory Board (you can see their names on the website).
Here’s where the rest of us come in… while having Sarah Jane’s medical records available online as a form of open-source information is a novel idea and an interesting one, the old saying “two heads are better than one” undoubtedly applies in this instance. One of the goals of the Sarah Jane Brain Foundation is to collect medical data from other families with children suffering from PTBI, and combine it into one centralized location so that medical experts can view it all together and better understand brain injury as a whole in order to better treat it.
There was great enthusiasm during Patrick’s presentation at the conference among attending medical personnel and other family members. The very prospect of having a huge database of the medical history of brain-injured children to review is an unprecedented, exciting idea, and one that they all could potentially benefit from.
Acquired brain injury (including falls, motor vehicle accidents, tumors, poisoning, strokes, etc.) is the number one cause of death and disability for children under the age of 15 in the United States. Over one million children in this country are hospitalized each year due to PTBI, yet less is known about it than just about any other condition.
Because of its uniqueness, Sarah Jane’s website has gotten huge exposure over the last year, with literally millions of visitors stopping by at some point and hundreds of thousands signed up on the mailing list. Within a year or less, this project will undoubtedly be huge in the medical world and everyone will be talking about it.
If you or anyone you know has suffered from a brain injury, or if you are a medical professional or even just interested in learning more about brain injury research, visit the Sarah Jane Brain Project’s website at www.thebrainproject.org.
Jennipher Dickens is a Staff Writer for the Roanoke-Chowan News-Herald. For comments and column suggestions, she can be reached via email at firstname.lastname@example.org or by calling (252) 332-7208.