When Nancy Donley’s son died of E. coli poisoning, she learned how poorly we are all protected from food contamination.
Originally published in Redbook.
A MOP-TOPPED REDHEAD WITH OVERSIZE GLASSES that magnified his gray eyes, 6-year-old Alex Donley was always on the prowl for someone he could cheer up with a hug and a gap-toothed smile. He would walk up to his grandmother’s friend who had Parkinson’s disease, stroke her trembling arms, and say, “I love you.” Or play with the boy with Down’s syndrome whom the other kids ignored. Or put his arms around his grieving teacher and say, “Don’t worry, your aunt is in heaven.”
He was Nancy and Tom Donley’s only child, and his mother guarded his every move. “Until he was 6, I wouldn’t even let him in the backyard by himself,” she says. “In stores, he had to be with me every single second. His seat belt went on automatically. I would have thrown myself in front of a bus to protect him. I would have done anything.”
But all of her caution couldn’t save Alex from the effects of a tainted hamburger he ate at a family backyard cookout in July 1993. On a Tuesday afternoon, seemingly out of nowhere, the boy was seized with stomach pains. Nancy Donley took Alex to his pediatrician, who looked at the results of a quick blood test and said, “There’s something wrong.” By the time they arrived at Children’s Memorial Hospital in Chicago, Alex was keeling over in pain and was soon having repeated bowel movements of blood and mucus.
For several days, while Alex’s condition spiraled downward, doctors at the hospital struggled to make a diagnosis. “He was in so much pain, and he was constantly in the bathroom,” says Donley, then 38. “They asked a million questions. What did he eat? Was anyone else sick? Did he eat at restaurants? Could he have gotten poisoned?”
Doctors eventually concluded that Alex was suffering from hemolytic uremic syndrome, a disease associated with poisoning by Escherichia coli 0157:H7, a bacterium found in cattle feces. More than 70,000 people become infected with this virulent strain of E. coli each year, mostly from eating tainted food, especially ground beef. Most people survive after a bout of diarrhea, but up to 500 people die, with children, pregnant women, the elderly, and the chronically ill the most vulnerable because of their weaker immune systems.
“This is a roller coaster,” doctors told Donley. “He could improve, but his kidneys are shutting down. We don’t know what we’re facing here.” Instinct told Donley she was losing her son. Alex developed tremors and stopped recognizing his mother. His eyes no longer focused, and he reported seeing spiders. With his brain swelling, he was moved into intensive care and soon lapsed into a coma and died. His last conscious gesture was an air kiss to his father.
“We asked that his organs be donated,” says Donley, “but there was nothing that could be salvaged except the corneas of his eyes. Portions of his brain were liquefied. His hypothalamus was gone, his intestines shredded. And it all happened so fast.”
ALEX’S DEATH LEFT DONLEY REELING. Though she immediately went back to work as a real estate agent, she couldn’t focus on anything and even contemplated suicide. What gave her reason to go on was Safe Tables Our Priority (S.T.O.P.), an organization formed in 1993 in the wake of an E. coli outbreak on the West Coast that left four children dead and hundreds ill.
Like most of us, Donley had assumed that the government was ensuring that the food she and her family ate was safe. But then her son’s pediatrician put her in touch with S.T O.P co-founder Mary Heersink, 45, an Alabama woman whose son almost died from the same organism that killed Alex. Donley was shocked at what Heersink told her about the process of meat inspection. “When I learned that Alex had died because there was cattle feces in hamburger, I was so outraged,” she says.
At the time Alex died, his mother discovered, meat was being inspected using a turn-of-the-century system nicknamed “poke and sniff,” where inspectors touched and smelled the carcasses and looked for lesions that might indicate a diseased animal. As early as 1990, the National Academy of Sciences was urging the federal government to take a more scientific approach, warning that “the vast majority of food-borne diseases occurring today cannot be detected visually.” Says Donley, “Even Alex, at the age of 6, knew that you needed to use a microscope to see bacteria.”
Donley realized she could not go back to just selling houses. “At the ripe old age of 39, I did my first protest,” she says, recalling a S.T.O.P. picket line outside a 1994 American Meat Institute seminar, where meatpackers and retailers were being warned not to voluntarily test hamburger for E. coli, lest they expose themselves to lawsuits. In 1996, Donley became president of S.T O.P and one of the nation’s leading crusaders for a safer food supply. She is also one of the few consumer representatives on the National Advisory Committee on Meat and Poultry Inspection.
“She’s saving lives,” says Representative Jan Schakowsky, a Democrat from Illinois who represents Donley’s Chicago neighborhood. “She has helped define what the debate is about: Are the American people going to be guaranteed safe food? Are you prepared for your child to die from eating a hamburger?”
THANKS IN PART TO DONLEY’S lobbying efforts, the nation’s meat and poultry inspection system has undergone a major overhaul. Under regulations proposed by the Clinton administration in 1996, which were fully implemented in January of this year, “poke and sniff” is finally a thing of the past. Meatpackers must now identify the point in the production process where their meat is most likely to become contaminated, then come up with plans to eliminate those hazards and monitor the trouble spots. The regulations also require slaughter plants to test meat for generic E. coli and to allow the Agriculture Department’s inspectors to test for salmonella (a major source of food-borne illness).
Yet it’s still far too easy for contaminated meat to make its way from farms to slaughterhouses to our dinner tables, argues Donley. “The public thinks that every single carcass is getting tested for both E. coli and salmonella, and this is just not the case,” she says. While Agriculture Department statistics show that in 1999 more than 85 percent of all chicken plants met the government’s standards for salmonella contamination, one sixth of all broiler chickens from smaller plants showed signs of the bug. And the testing program only covers generic E. coli, not the strain that killed Alex Donley, partly because at the time the rules were devised experts thought that strain was rarer than it has turned out to be.
“President Clinton has taken many important steps, but even with these changes, significant gaps still exist,” says Caroline Smith DeWaal, the director of the program on food safety at the Center for Science in the Public Interest in Washington, DC. “The public is still experiencing too many outbreaks and illnesses.”
In 1998 and 1999, for instance, tainted hot dogs and deli meats from a processing plant in Michigan killed at least 21 people and caused six miscarriages and stillbirths. The meat was contaminated with the bacterium Listeria monocytogenes, which causes a flulike illness that’s particularly dangerous for babies, pregnant women, the elderly, and anyone with a compromised immune system. Around the same time, 12 children in Washington State became violently ill after eating E. coli-tainted taco meat in their school cafeteria. Four of the children needed blood transfusions and one child required dialysis.
Government and industry leaders claim that eating a hamburger or a chicken breast poses considerably less risk than, say, driving a car. “The United States has an extremely safe food supply,” insists Margaret Glavin, associate administrator for the U.S. Department of Agriculture’s Food Safety and Inspection Service. “We are constantly improving our systems for regulating the meat and poultry industries.”
Still, a comprehensive 1999 report by the Centers for Disease Control and Prevention (CDC) estimates that food-borne diseases cause 76 million illnesses, 325,000 hospitalizations, and 5,000 deaths each year in the United States alone. Scientists have identified more than 200 different diseases that are transmitted through the food supply, and no one knows for sure what causes most of these diseases. Three kinds of bacteria (salmonella, listeria, and toxoplasma) are the biggest known culprits, causing symptoms ranging from mild stomachache to life-threatening organ failure.
According to the CDC report, 81 percent of food-borne illnesses and 64 percent of fatalities come from organisms that scientists can’t yet identify. Some of the most worrisome, including the strain of E. coli that killed Alex Donley, emerged just 20 years ago. In the natural course of evolution, new strains of bacteria develop; identifying them is a race requiring a significant commitment of research funds. “Like us, the bacteria try to find their own niche,” says Thomas A. Cebula, Ph.D., a molecular biologist with the U.S. Food and Drug Administration. “Every so often, we collide.”
Another reason for the continued outbreaks is that the goverment lacks the power to recall meat when it’s found to be contaminated. The Department of Agriculture can pressure companies to do voluntary recalls, but sometimes days will pass while a business negotiates how much meat to pull off the shelves. For example, when contaminated ground beef sickened 16 Colorado residents in 1997, Donley lobbied the government to urge the producer, Hudson Foods, to recall 25 million pounds of meat instead of the 20,000 pounds they’d originally planned. “The negotiating with Hudson Foods went on for days,” says Donley “Meanwhile, that stuff was on the shelves, being purchased, and going into families’ refrigerators and freezers.” Notes the Agriculture Department’s Glavin, “If we have dangerous food out there, even hours are important.”
What’s more, the department has trouble cracking down on repeat offenders because it’s not authorized to levy fines. “The Secretary of Agriculture can issue civil penalties for the abuse of a circus elephant,” says Senator Tom Harkin, a Democrat from Iowa, “but not for the shipment of adulterated meat.”
Harkin has introduced a bill giving the Agriculture Department the authority to recall meat and issue fines, but industry opposition has kept the measure bottled up in committee. “When the government finds a problem, a cooperative effort with the company that made that product is what is really needed,” says Rosemary Mucklow, executive director of the National Meat Association. “We do not need to give the government more authority to demand information that may interfere with getting food off the shelves.”
Donley and S.T.O.P. are now lobbying Congress heavily to get Harkin’s bill out of committee. And Donley has been speaking before the Department of Agriculture’s Food Safety Information Service, to push for new rules requiring testing for the lethal strain of E. coli, and working with the CDC to identify the need for further funding for surveillance and research into the unidentified organisms that continue to make people sick.
“This is an issue that doesn’t discriminate on race, religion, or sex,” says Donley. “Anyone can be just a bite away from devastation and tragedy.”
AS LONG AS THE SYSTEM HAS FLAWS, Donley says, she plans to keep up the fight against contaminated food, though it’s not something she enjoys. “She doesn’t get a buzz from any of this Washington stuff,” says Darlene Czaja, 45, a childhood friend of Donley’s. The stress of travel—and of constantly reopening the wound of Alex’s death—has strained many of Donley’s relationships. “The saddest part is that she doesn’t have time anymore for her family and friends,” says Donley’s sister Kathy List, 44. “I’ve learned to accept it, but it hurts. We don’t have chitchat conversations anymore. We used to be able to laugh ourselves to tears. That doesn’t happen very much anymore.”
Her marriage, too, has felt some strain. Her husband, Tom, an antiques dealer, often feels like he takes a backseat to her crusade. Not only does the couple have little time together, but they’re mourning Alex in very different ways. “I can do almost nothing but grieve,” Tom says. “Nancy, on the other hand, has never begun to grieve. If she had, she would have to accept that Alex is really dead. Everything she’s doing is keeping him alive.” But he realizes that his wife is preventing the deaths of others. “I just respect what she’s doing so much,” he says. “I miss her like crazy when she’s away, but I feel like what she’s doing is so damned important that I’m not upset.”
Part of Donley wants to quit. But she can’t. “Sometimes I want desperately to just crawl into a corner, get into a fetal position, and have the world go away,” she says. “But I have to do this. This is my reason for living, and quite honestly, if I hadn’t started doing this, I doubt I’d be alive today.”
SIDEBAR: How to protect yourself
There’s no way to completely avoid food-home illnesses. But Stop Foodborne Illness and the National Consumer League offer several recommendations to reduce your risk:
- Always wash your hands before preparing food. Scrub vigorously with soap for ten to 15 seconds.
- When shopping, check the expiration dates of the foods you buy. Make sure eggs don’t have cracks, cans don’t have dents, and animal products don’t have foul odors. Buy perishables last and keep them in the coolest part of your car (not the trunk) on the way home.
- Food-borne germs can be transferred through cutting boards, knives, sponges, and hands. To prevent such cross-contamination, keep raw meat, poultry, eggs, and fish away from other food. Use different utensils and cooking equipment when preparing meat and vegetables. Use one spatula to place hamburger patties on the grill and another to remove them. Don’t place cooked meat on a plate that held raw meat.
- Use a meat thermometer to determine whether your dinner is fully cooked. Red meat should be cooked to 160 degrees throughout, and poultry should be cooked to 180 degrees.
- Cook eggs until yolks are firm. Don’t eat raw cookie dough, cake batter, or Caesar salad unless pasteurized eggs have been used.
- Never consume unpasteurized milk or dairy products.
For a more comprehensive list, visit www.stopfoodborneillness.org.