The thick, black binder that Paula Gillett keeps charts her son Jack's battle last year against a food-borne illness caused by E. coli. Filled with medical records, meal calendars and other papers, the binder documents Jack's initial illness, the kidney failure that struck next and his eventual recovery.
What is not in Gillett's binder -- and what Jack's doctors and state and local health department officials could never determine -- is the source of the E. coli that caused his illness, kept Jack in hospitals for three weeks, and led to 13 dialysis treatments and six blood transfusions.
"Do I want somebody to be mad at? Maybe," Gillett said during an interview at the family's Rockford home. "I just want to know how this happened to my son. I want to have the knowledge."
Her 10-year-old son's ordeal and the lack of certainty about what caused his illness illustrate two troubling, though not widely known, aspects of food-borne illness. Even as tainted food causes thousands each year to endure long-lasting illnesses, health agencies are having a difficult time finding the cause of the problem, and a push is on at the federal level to better trace suspected pathogens.
Conventional wisdom holds that food-borne illnesses are mostly minor and short-lived. And while the vast majority of victims do not see a doctor, blaming their symptoms on a routine virus, some victims experience serious and long-lasting medical consequences such as kidney failure or paralysis. Of an estimated 76 million food-borne illness victims each year, some 300,000 are hospitalized and close to 5,000 die.
"There's a real misconception about how serious a food-borne illness can be," said Susan Vaughn Grooters, public health specialist at Safe Tables Our Priority, or S.T.O.P., a food safety group based in Northbrook. "Who really thinks that a hamburger can paralyze somebody?"
It also is often assumed that the cause of these illnesses is eventually tracked down -- and often connected to a major outbreak, like the ones that tainted spinach in 2006 and caused three deaths. In fact, in nearly 60 percent of outbreaks, a source of the pathogen is never found; the illness remains a public health mystery, according to the Centers for Disease Control and Prevention.
In cases not tied to an outbreak, determining the source of a pathogen can prove even tougher. It is difficult, if not impossible, to recall a week of meals and snacks eaten during a food-borne illness's incubation period, much less find what remained from the tainted meal or unused ingredients to test.
"Really, the only time you nail these things down with any satisfaction is when you have a really, really large outbreak," said Dr. Glenn Morris, director of the Emerging Pathogens Institute at the University of Florida. "With an individual patient, it's exceedingly difficult to identify the source."
There are obstacles to identifying the food source of a pathogen throughout the food safety system. While molecular fingerprints of the pathogen, taken by lab workers, help identify it, if the tainted food has not been found, then researchers can only link victims to each other, not to a source.
And in cases like Jack's, where there appears to be one victim, it is nearly impossible to identify the tainted food.
Food safety advocates say a quicker response to illnesses may help identify sources, as would better tracking of food through the manufacturing process.
In an effort to find ways to better trace tainted food, officials from the Food and Drug Administration and the Department of Agriculture will hold a public meeting next month to search for solutions. Better tracking mechanisms also are included in pending food safety legislation.
Among the other goals are improving communication between hospitals and local and state health officials, as well as between state health departments when an outbreak crosses state lines.
"People just aren't communicating the way a good system should be. We'll never be able to figure out how to prevent long-term consequences if we don't know what's making them sick," said Vaughn Grooters.
Over the course of three weeks in two hospitals, Jack had 13 dialysis treatments and six blood transfusions, according to his mother and the medical records she has maintained.
Jack's odyssey with a food-borne illness began in July 2008, when he accompanied his parents on a three-day driving trip through Illinois and Indiana to Kentucky, where Jack's father, Bruce, had business.
Along the way, the family stopped at restaurants, including fast-food places, and stayed in a motel. One night, Jack and his father had a bout of diarrhea, but it was over quickly, and Gillett assumed it was just a virus. When they returned to Rockford, Jack again had diarrhea and was vomiting, had a fever and suffered pain on his right side. His mother feared the boy's appendix was inflamed.