Once upon a time in your life B.C. (Before Children), you might have thrown caution to the wind now and again—until you held that tiny person in your arms. Overnight, your stake in the future seems greater than Wall Street’s dependency on the Federal Reserve. You strive to do everything right—not just to give your kids the best possible life, but to help ensure the world becomes a better place for them to live in. You buy organic veggies, study labels to make sure the foods you choose are free of trans fats. You opt for grass-fed, free-range beef sans growth hormones … but, sometimes, even your best efforts are thwarted.
On Tuesday July 31, 2001, 2½-year-old Kevin Kowalcyk awoke with diarrhea and a mild fever. Wednesday, he was taken to the emergency room. A stool sample was collected, and Kevin’s parents, Barbara and Michael, were given a diagnosis: E.coli O157:H7. On Saturday, August 11—12 days later—Kevin died.
Every Mother’s Worst Nightmare
Although the Kowalcyks generally avoided fast-food runs, they were on summer vacation. Mental snapshots come into focus as mom, Barbara, describes their dream vacation—carefree days on the road. Family. Friends. Smiles all around—a grinning, sandy-haired toddler gripping a burger with clumsy little-boy hands. Then, vacation was over, and the nightmare began.
“If we’d known what was in store for us,” says Kowalcyk in hindsight, “we’d have never come home.”
At least one of the burgers Kevin ate was contaminated with E.coli O157:H7, and two weeks later, he developed E.coli HUS, or hemolytic uremic syndrome, a very serious complication of E.coli O157:H7 that can take children (and adults) to the brink of death and back. For Kevin, there would be no return.
Kowalcyk, now founder and director of the Center for Foodborne Illness Research & Prevention (CFI), later discovered the meat her son ate was recalled 16 days after his death. She and her husband now both advocate for Kevin’s Law—legislation that would give the U.S. Department of Agriculture (USDA) the power to shut down plants that repeatedly produce contaminated meats. To date, Kevin’s Law has not passed, and Kowalcyk continues working to impact our laws on a national scale.
But, “I didn’t start out where I am now,” Kowalcyk says about her advocacy. “Even after Kevin died, if you’d told me I’d be doing this, I would have said you were nuts … but you never know what road life is going to take you down.”
Kowalcyk is also adamant her job now is far easier than what Kevin endured.
His illness began with ordinary enough symptoms, she recalls. “He vomited a few times. We thought it was a 24-hour bug.”
By the first Saturday after he fell ill, he was on daily, three-hour dialysis treatments and vomiting black bile. “It looked like tar,” describes Kowalcyk. “He desperately wanted water—that’s all he could talk about. It put begging in a whole new light for me,” she says.
She stops to take a shuddering breath before explaining that, eventually, they put Kevin on continued dialysis and a ventilator, because the doctors feared he was expending too much effort “breathing.” Still, the family remained hopeful. The acute phase of HUS, his doctors had said, typically lasted 15 days.
“Kevin made it 12,” she says.
“They [the doctors] brought a special crib into his room—all the way from Minnesota—because they were afraid Kevin might develop bedsores. He was never stable enough to move into it,” she adds.
For the duration of her son’s illness, the crib sat empty in his room, a silent portent.
“Kevin died without my husband or me there,” she laments. “They brought us into a 7×7 room and gave us the option to just hold him while he died … or try one more treatment.”
They decided to try one more treatment.
“When you have a 2½-year-old, what other choice can you make?” she asks. “No matter which way you go, there’s going to be guilt. I know there was guilt for me,” she admits.
About That Tummy Ache …
With 76 million tummy aches reported annually, chances are that yours (or your child’s) is related to a food-borne illness. Food-borne contaminants also account for approximately 325,000 hospitalizations and 5,000 deaths in the United States every year, according to the Centers for Disease Control and Prevention (CDC). There are more than 200 known diseases transmitted through food, but it’s one particular strain of E.coli that carries the toxin (Shiga) that causes HUS, reveals Dr. Jeffrey Kahn, chief of infectious diseases at Children’s Medical Center at Dallas and professor of pediatrics and microbiology at UT Southwestern.
“Fortunately, this bacteria accounts for a very small number of illnesses,” he reassures.
And not everyone infected with E.coli bacteria develops HUS. HUS only occurs in about 2 to 7 percent of those infected with E.coli O157:H7, and children, especially those younger than 5 years old, along with the elderly and those with weakened immune systems, are at highest risk.
Food-borne illnesses present in many different ways, according to Kahn, but symptoms to watch include bloody diarrhea and protracted vomiting—vomiting, however, is usually not a symptom of HUS, he says. Medical care consists, for the most part, of treating for dehydration.
Antibiotics aren’t an option. “It’s counterintuitive not to use antibiotics, because it’s a bacterial infection, but if you give these kids antibiotics, they are at higher risk of progressing into full blown or severe HUS,” says Kahn. “There is very little we can do. We don’t have any tools to predict or prevent the progression of this disease.”
Kowalcyk adds, from experience, “Once [HUS] develops, the best they can do is keep the body alive while the disease runs its course and then hope they can fix everything when it’s over.”
Avoiding The “Bug”
With so little to be done in the way of treatment, the onus falls to prevention, and knowledge is key. A variety of food groups are known to carry contaminants, according to Kahn. “For the most part, these bacteria are benign,” he says. “But E.coli is one of the major ones.” And typically, you think of meats as the source.
But it’s not just meats we have to be wary of. In June of 2009, the CDC released data concerning 65 people from 29 states—including 3 from Texas—who were infected with E.coli O157:H7. The culprit? Nestle Toll House cookie dough. And in February of 2009, salmonella, another food-borne bacteria, was traced to one Georgia producer’s peanut butter. Strains of salmonella and E.coli have also been found in leafy greens and even apple juice.
“Buying organic vegetables will not protect you,” says Kahn. Because, “any farm or food product can be contaminated. There’s no way to tell. It doesn’t smell funny, it doesn’t look funny.”
To better understand how to avoid these food-borne illnesses, Kahn places contaminates into two categories: The first is agricultural products—like meats or milk—that are contaminated at the source. The other category is foods that are contaminated along the production lines—for example, “[when] meats are not being handled or cooked properly in the kitchen,’ explains Kahn.
Kahn’s best advice to avoid food-borne illnesses is also mom’s best advice: Wash your hands. “Good hand washing is the most important thing you can do,” he says. Also, “make sure you’re drinking pasteurized milk and handling food properly in the kitchen.”
Finally, stay informed, and “steer clear of foods that are known to be contaminated,” he says. (See sidebar for more information about how to get alerts.)
Kowalcyk has come to understand the importance of information. With her background as a biostatistician, she says it was her job to stay informed—that she was aware food could kill. But, she explains, “If I didn’t know about [the dangers of food-borne illnesses], most moms probably don’t know. I just want to give consumers the info they need to make an educated decision.”
Even after Kevin’s death, she says they had to fight for answers. Under the Freedom of Information Act, they requested the “DNA fingerprints” from the USDA for all meat recalls that took place in 2001. Kowalcyk says it took several threatened lawsuits and six months to receive all the information, but after reviewing all the documents, they discovered the DNA of Kevin’s E.coli matched that of a July 2001 outbreak.
In July of 2000—a full year before Kevin’s illness—that same company had failed USDA’s salmonella test for the second time. Then again in December 2000, it received a positive random E.coli test that led to 1.1 million pounds of ground beef being recalled. And that plant tested positive again on August 2, 2001. Finally, on August 27, 2001, after 25 days of negotiations, the plant recalled 530,000 pounds of contaminated ground beef.
In retrospect, Kowalcyk adds, “When I needed the government most, they weren’t there for me. I don’t have a microlab in my house. So the government needs to step in and protect us.”
She adds, “I want to do something to improve the system.” But if you ask her what really led her down the path to advocacy, Kowalcyk answers, “I felt I didn’t have a choice.”
The Accidental Advocate
The word “activist” has traditionally had negative connotations. Webster’s defines it as “a practice that emphasizes direct, vigorous action, especially in support of or opposition to one side of a controversial issue.” Advocacy, on the other hand, is defined simply as the “support of a cause.” But in order to advocate change of any kind, you have to be willing to act … which brings us squarely back to the word activism. For Kowalcyk, acting meant helping to clean up and regulate our food supply.
“I don’t remember large segments of that first year,” she admits. “For a long time, we were in deep grief. [Those already lobbying for Kevin’s Law] contacted me and wanted me to attend a press conference. I couldn’t. I was pregnant with my daughter Lara …. My husband, who had no interest in advocacy, said, ‘I want to go.’
“At the press conference, they asked [Mike] to introduce this new legislation, and he ended up on Frontline. [Later], they began calling it Kevin’s Law, because, while Mike was speaking at the conference, he put up a picture of Kevin.”
Advocacy is “not left wing or right wing, it’s about doing what’s right,” she says. “It’s about standing up for what you believe in and really making a difference in society.”
“What really got to me,” she says, “was how poorly the public health department handled the entire situation. Most people don’t understand that getting a food-borne illness is like playing Russian roulette.”
Because of the potential public health hazard, the family provided stool samples, but never heard back from the health department. It wasn’t until Kowalcyk’s mother, Pat Buck, called nearly six weeks after Kevin fell ill that the family finally learned they had all tested positive for E.coli O157:H7.
“That means my 5½-year-old daughter Megan had it, too,” stresses Kowalcyk. “One child lived, one child died.”
Kowalcyk says their physician was furious because E.coli is shed (via the stool) for a full two weeks afterward, and while mom and dad’s attention was focused on Kevin, daughter Megan was kept busy by friends at the neighborhood pool. It could have led to a major outbreak, she says.
“Telling Kevin’s story is still really hard,” she admits. “But I’ll tell it over and over if it’s going to help others. I want to be part of the solution. I don’t want to be just a victim—I don’t want Kevin to be just a victim.
“I go to the airport after [speaking] and stand there and cry. That’s how I cope.”
Eventually, Kowalcyk quit her job to focus on food safety and environment health. She served on the Board of Directors for S.T.O.P. (Safe Tables Our Priority) for several years, and then, with her mom Pat Buck, formed CFI. Their story was featured in the documentary, Food, Inc.
Together, the Kowalcyks have four children: Megan, 14; Lara, 7½; Christopher 5½; Kevin would be 11 today. “I always include him,” she says. “It’s important to us that our children understand that, even if you die, you count. Because Kevin never had the opportunity to be a productive part of society, we’re going to do it for him.”
