Sarah Jane Donohue, of Wilton, Connecticut, was violently shaken by a private nurse when she was just five days old, breaking her collarbone and ribs and traumatically injuring her infant brain. Unable to cry, her parents took her to the hospital two weeks after her birth, finally learning of what the nurse had done to their daughter and the extend of Sarah Jane’s injuries. The head injury she suffered, on a scale of 1 to 10, was an eight.
Doctors gave Sarah’s parents little hope that she would ever walk or talk, but Sarah’s father fought that advice, doing his own research and founding the Sarah Jane Brain project. Finding that there was extremely limited understanding of the infant brain and even less documentation of appropriate treatment plans, Mr. Donohue created a four-phase plan to bring attention to Pediatric Acquired Brain Injury (PABI).
The last piece of the ongoing Sarah Jane Brain project was added in July – HR 2600 was introduced in the United States Congress. Fully-named The National Pediatric Acquired Brain Injury (PABI) Plan Act, the PABI Plan is intended to ” Develop a seamless, standardized, evidence-based system of care that is universally accessible for the millions of families who have a child or young adult suffering the leading cause of death and disability for American youth — brain injury,” commented U.S. Rep. Leonard Lance.
Pediatric Traumatic Brain Injury
Traumatic brain injury in children and young adults is, unfortunately, not uncommon. The Centers for Disease Control reports that hospital emergency rooms see 765,000 people 25 years old or younger for traumatic brain injury. Over 80,000 of the TBI patients are hospitalized and 11,000 die annually.
Dealing with pediatric TBI can be very confusing; policies can differ greatly among states, or even school districts. One issue that the Sarah Jane Brain project hopes to address is improving communication and resources about the care and treatment of PABI so that families aren’t left recreating the wheel, but rather can focus existing information on the best course of action for their son or daughter with a traumatic brain injury.
The PABI Plan Act focuses not only on extreme cases, such as the one involving Donohue’s daughter, but also lesser traumatic brain injuries, like concussions that are more commonly a component of sports injuries and comprise 80 percent of traumatic brain injuries. Federal funding for TBI has been low, less than $10 million a year, a fraction of what is offered for other, more rare conditions.