From Personal Tragedy to Worldwide Mission
Story by Alayna DeMartini
This articcle originally appeared as a CFAES News Stories on March 7, 2019
The photos set out on the table before Barbara Kowalcyk offer a glimpse of her family nearly two decades ago, just before their lives upended.
In one, Kowalcyk, her husband, Mike, daughter, Megan, and son, Kevin, stand atop a cliff in Maine, part of an extended vacation driving along the East Coast and through the Midwest. Kevin stands alone, in another photo, his hands and knees resting on a rock with the backdrop of the Atlantic Ocean. He looks as if he might just crawl out of the photo.
Two weeks after that picture was taken, Kevin died at 2 1/2 years old. He suffered complications from an E. coliinfection, one that he developed, most likely, from eating contaminated hamburger meat.
His unexpected passing would compel Kowalcyk to devote her career to preventing people from getting sick or dying from contaminated food, and to helping change national policies that hold food producers accountable to the public.
An assistant professor of food science and technology in The Ohio State University College of Food, Agricultural, and Environmental Sciences (CFAES), Kowalcyk has until recently focused her work on foodborne illness prevention in the United States. But in November, she received a $3.4 million grant from the Bill & Melinda Gates Foundation and the U.K. Department for International Development to improve the safety of food in Ethiopia, where people commonly drink unpasteurized milk and eat raw meat.
What drives Kowalcyk is the ambition to keep others from going through what her family did nearly two decades ago.Kevin woke up one summer morning with diarrhea and a mild fever. Within a couple of days, he was hospitalized for dehydration, and a stool sample revealed that he had an E. coliO15:H7 bacterial infection.
The E. coli strain that infected him, E. coli O157:H7, is the same type linked to a recent multistate recall on romaine lettuce, a spinach recall in 2006, and a Jack in the Box hamburger recall in 1993 that sickened 700 individuals and led to the deaths of four children.
E. coli O157:H7 is not always deadly. A healthy adult could recover from an infection in a little over a week with just mild symptoms: diarrhea, fever, and a stomachache. But for Kevin, the bacterial infection turned fatal because, as a toddler, his immune system still was developing.
Kevin’s E. coli infection led to hemolytic uremic syndrome (HUS), which caused his kidneys to shut down. He was put on continuous dialysis and a ventilator.
For 10 days in the hospital’s intensive care unit, Barbara, her husband, and other family members agonized as they watched Kevin struggle, become increasingly weak, and then become unresponsive. He threw up black bile and smelled a horrible scent that Kowalcyk can’t describe, but that she will never forget. He begged for water. For juice. For the turtle pool he swam in at home. Giving him water would only make him worse, doctors warned, but they allowed him to have a sponge bath. As soon as the washcloth came near his mouth, he grabbed it, bit down, and sucked out the water.
On Aug. 11, 2001, the once-curious young boy with blue eyes and sandy brown hair, who liked to mimic his older sister, died.
In the months following, Kowalcyk barely had the will to get up in the morning. If she hadn’t had her 5-year-old daughter to take care of; if she hadn’t had a mortgage and needed to get to work; if she hadn’t had friends who drove her to counseling, drove her to errands, cleaned her house, she might have just stayed in bed. At times, regret crept in. She wondered if she had fed Kevin something different, if she had shopped somewhere else, he might not have gotten sick.
“If you focus on everything that you could have done differently, it destroys you,” Kowalcyk said. “No good can come from that.”
Reeling with so many unanswered questions, she and her husband felt compelled to begin what would become a lengthy and exasperating search to find the source of Kevin’s E. coli infection. In the week before his illness, Kevin had eaten three hamburgers. The Kowalcyk’s attorney immediately suspected ground beef, which has been associated with some outbreaks of E. coli O157:H7.
It took two years, the assistance of congressional representatives, and several threatened lawsuits for the Kowalcyks to get the public records that would show that the DNA of Kevin’s E. coli bacterial infection matched that of a meat recall issued in August 2001, a little over two weeks after Kevin died.
The recalled meat came from a producer in Wisconsin, where the Kowalcyks lived at the time. While Kevin was hospitalized, the U.S. Department of Agriculture tested the plant’s meat for E. coli O157:H7. Though that test came back positive, it took 25 days of USDA-industry negotiations before the plant recalled a little over half a million pounds of ground beef.
In the year before Kevin passed away, the company’s meat had failed a Salmonella test twice and had a positive, random E. coli test, triggering an earlier recall of ground beef.
“The system failed Kevin,” Kowalcyk said. “If it had worked the way it was supposed to, he likely would not have gotten sick and he would still be alive today.”
But the Kowalcyks were stymied in their efforts to definitively prove that the recalled meat led to their son’s death. Working with their lawyer, the Kowalcyks tried to get records on all of the retail outlets that might have received the recalled meat, but because the USDA considers those records to be proprietary, the agency could not offer them up.
In an effort to get those records, the Kowalcyks sued the meat producer and the two stores that sold the hamburger that Kevin had eaten. Eventually, the Kowalcyks dropped the lawsuit because neither the meat producer nor the retailers could provide those records.
“We felt we owed it to Kevin to find out,” Kowalcyk said. “Every time there’s another recall on contaminated meat, we question if we made the right decision to drop the suit.”
Before becoming involved in food safety, Kowalcyk spent 10 years working in clinical research as a biostatistician, analyzing and interpreting data from clinical trials, including those for Seroquel, an antipsychotic drug used to treat schizophrenia and other psychiatric disorders.
In 2004, Kowalcyk began to focus solely on food safety advocacy work. She cofounded, with her mother, the Center for Foodborne Illness Research & Prevention, which will soon become a part of CFAES. The nonprofit organization promotes science-based approaches to preventing illnesses caused by food. One aim is to improve regulatory standards and testing programs to reduce the odds of food becoming contaminated, and if it does, improving the means of tracing it back to the source.
To add to her credibility as an advocate, Kowalcyk went on to get a doctorate in environmental health.
“I didn’t want to be viewed primarily as a grieving mom,” she said. “I wanted to be seen as a scientist who happened to have been affected by a foodborne illness.”
As a member of a National Academies of Sciences committee, Kowalcyk helped draw up recommendations for reforming the way the Food and Drug Administration oversees food safety. Several of those recommendations were included in the Food Safety Modernization Act of 2010. In her many visits to Capitol Hill, Kowalcyk also helped lobby for passage of the act, which requires the FDA to inspect facilities more frequently and improves how contaminated food can be traced back to a source.
She currently serves on the FDA Science Board, which advises the FDA on scientific issues, including food safety.
Kowalcyk also has advocated for improving USDA testing programs that set standards for meat and poultry sold for people to eat.
“There’s still a lot more we can do to improve surveillance and help people realize there is a risk in food, and to help them make decisions that will reduce those risks as much as possible,” Kowalcyk said.
She wants people to be aware that while most cases of food poisoning lead to temporary illnesses, some have long-lasting consequences: chronic, long-term diseases including irritable bowel syndrome, reactive arthritis, and kidney failure.
“A lot of people think that foodborne illnesses cause 24 hours of diarrhea and maybe vomiting,” Kowalcyk said. “You can develop serious, chronic illness from contaminated food.”
On Capitol Hill, in board rooms, in classrooms, and in interviews with the media, Kowalcyk has told her personal story many times. Sometimes she speaks without hesitation. Sometimes she tears up and can hardly breathe. She never knows when that will happen.
“As difficult as it is to tell that story, what Kevin went through was much harder,” Kowalcyk said.
So often, people approach her and say her story changed their life, so she’s willing to continue talking about what happened.
“If I can get one person in the room to change their behavior, it’s worth it to me. That’s the way I look at it. It’s the best I can do with a bad situation,” she said.
It’s no surprise Kowalcyk frequently is contacted by local and national media when an outbreak occurs. She can quickly put it in context, and can rattle off all of the more significant foodborne illness outbreaks in the United States. She can name the date, the location of the source of contamination, and the type of food.
Three times she has been on The Dr. Oz Show, and in 2008, she participated in the filming of Food, Inc., a documentary on food production in the United States. The film features a video of Kevin during the summer vacation his family took just weeks before he died. In the video, Kevin stands at the ocean’s edge in Maine. His uncle lifts him up and gently sweeps the boy’s feet into the water. As the viewer watches Kevin reveling in the water, Kowalcyk details his experience in the hospital begging for something to drink.
As shattering as Kevin’s death was, Kowalcyk has also come to view his passing as a catalyst for saving lives. That reckoning has come over time.
In the months after Kevin’s death, Kowalcyk felt angry and bereft. People sent her books, a lot of books, so she read and read. She reached a turning point after reading a chapter in When Bad Things Happen to Good People about suffering, about the biblical figure of Job, and she began thinking about how she could either remain stuck in anger or let Kevin’s suffering turn into something good.
“That’s it,” she told her husband. “Kevin is going to be a martyr for good.”
Neither she nor her husband knew then how they were going to make that happen. They started with an annual blood drive and a scholarship fund. And then one day, they got a call from Washington, D.C. Did they want to appear in the Capitol for a press conference on legislation, later named Kevin’s law, that would give the USDA the power to close down plants that repeatedly produced contaminated meat?
At the time, Kowalcyk was a few months away from giving birth to another child, a daughter, so she couldn’t go. However, her husband did, along with other family members. He brought with him to the press conference a 3-foot-tall reprint of a portrait of Kevin and held it up when he was asked to speak. Though Kevin’s law ultimately did not pass, key elements of it are contained in the Food Safety Modernization Act of 2010.
Kowalcyk had never envisioned herself as being out in front of an issue, advocating in such a public way. But the path began to feel right, a path toward ensuring that Kevin’s life would have meaning not just within their family but well beyond.