Editor’s note: This story was originally published by The Ohio State University and is republished here with permission. The author is Barbara Kowalcyk, Kevin’s mother.

Kevin came into our lives early in the morning on December 10, 1998. Our second child – our first son – immediately captured our hearts, and soon showed us just how strong he was. Only hours old when he began struggling to breathe and maintain his temperature, Kevin was rushed to intensive care. Determined to live, he fought hard, and recovered within two days, leaving doctors perplexed as what could have caused his life-threatening difficulties.

As Kevin grew, his wonderful little personality began to emerge. He was clearly very bright, spending hours studying the shapes around him and trying to mimic everything his older sister Megan could do. He had a sensitive side as well, and was very in tune to the feelings and moods of those around him. I was completely in love with him.

On Kevin’s first birthday, the moving truck arrived to pack up our home in Delaware and move us to a small town near Madison, Wisconsin, where my husband had taken a new position. We improvised by celebrating him at a restaurant, with a cupcake and a candle. He didn’t mind in the least. Laid back like his dad, Kevin took it in stride, as he did the ensuing move. By the summer of 2001, we had settled into our new life. Mike was working as an economist, I was a research biostatistician at UW-Madison, Megan was starting kindergarten, and Kevin was in the “terrible twos”– frustrated that he couldn’t do everything his big sister could. That never stopped him from trying, which often ended in messes and minor disasters. Even so, I couldn’t get mad at him when he looked at me with those twinkling blue eyes…he was just too cute!

In July, we headed off on a much-anticipated family vacation, which took us from New Jersey to Maine. Stopping along the way at Plymouth Rock, Acadia National Park, the Baseball Hall of Fame, and Niagara Falls, we visited with several old  friends and relatives. It was by far the best family vacation we had ever taken. Had we known what was in store for us, we would have never come home.

On Tuesday, July 31, 2001, two weeks after returning home, Kevin awoke with a mild fever. He also had diarrhea. The following day, the diarrhea was bloody. Growing concerned, we took him to the emergency room that evening, but after a short exam, they sent us home. By the next morning, Kevin was even sicker. We went back to the hospital; this time they admitted him, treated him for dehydration and bloody stools, and ran several tests. The diagnosis came in later that afternoon: E.coli O157:H7.

On August 3rd, Kevin’s kidneys started failing; he had developed what the doctors had dreaded: Hemolytic uremic syndrome (HUS). The condition destroys platelets and blood vessels, including the very small ones in the kidneys, brain, heart, and intestines. Late that night, Kevin was transferred to UW Children’s Hospital PICU. Mike and I spent the next eight days and nights in that hospital, watching our beautiful son slip away from us with every passing hour.

It was a Saturday when Kevin received his first dialysis, a three-hour procedure during which a nurse, my husband, and two of our friends had to restrain him by holding his little arms and legs, all the while talking and singing songs to reassure him. Kevin spent the rest of that day and the next two crawling around a crib, in agony from the vicious attack on his tiny body. He vomited black bile. He became drawn, and his eyes were sunken. He looked like a malnourished third-world child. And he smelled – a horrible and overwhelming smell – a smell you could never forget. During those three horrible days, he repeatedly begged us to give him some water or juice, but the doctors said it would only make him worse, so we had to tell him no. He started asking to swim in his turtle – the baby pool in our backyard. He kept up his heart-rending pleas until we finally agreed to give him a sponge bath, and the instant that washcloth came near his mouth, he instinctively grabbed it and sucked the water out of it. It broke our hearts.

Kevin continued to decline. On Tuesday, August 7th, he was placed on a ventilator and more dialysis, this time, round-the-clock. In the hope of preventing any memory of the ordeal, the doctors sedated him heavily. Every time the medication started to wear off, though, he would try to pull the tubes out, so they were forced to put braces on his arms to restrain him. When his body began to swell, doctors inserted more tubes to drain the fluid that had accumulated in both lungs. By the end of the week, he was receiving more medications than we could count to stabilize his blood pressure and heart rate. He had received eight units of blood. A special bed had to be ordered in an effort to alleviate his pain. Despite all this, hospital staff remained optimistic, assuring us that this was the typical course of recovery for kids with HUS.

But for Kevin, all of the treatments, transfusions, and medications were not enough. On August 11th at 8:20 pm, after being resuscitated twice – and just as doctors were attempting to put him on a heart-lung machine – our beloved little boy died. He was 2 years, 8 months and 1 day old. The autopsy later showed that both Kevin’s large and small intestines had died – a condition that is 100% fatal.

In the days and weeks after Kevin’s death, we were plagued, not only by grief, but by a hundred nagging questions: how could Kevin have gone from being a healthy, vibrant toddler to being dead in just 12 days? And more importantly, how did Kevin get E. coli in the first place?

We would spend the next three years trying to find the answers to these questions. What we learned – and the difficulties we encountered – were shocking.

Since E. coli O157:H7 is a reportable infectious disease, our county public health department had been notified as soon as Kevin was diagnosed. While he lay in intensive care, health department officials had interviewed my husband and me for an hour-and-a-half. They had asked for stool samples from us and our daughter so they could determine if we, too, had contracted E. coli. We had complied, and then waited for the results of the tests, as well as the investigation they promised to conduct. Incredibly, we never heard from them again. 

In early September, my mother asked me if she could follow up with the public health department. We were floored when she told us what she’d learned: my husband and daughter had also tested positive for E. coli O157:H7! Their only symptom was one loose bowel movement. Had Kevin not been sick, we wouldn’t have even given it a second thought; but you would think that with three cases of E. coli O157:H7, our local and state health departments would have launched a thorough investigation. Even though reporting regulations specify that three cases constitute an outbreak, we were told that Kevin was “an isolated case.” The health department official said they regarded Kevin as the original case, and my daughter and husband as having contracting their E. colifrom him, not from a food source. Further, he said, the chances of accurately identifying the source of Kevin’s illness were less than 5 percent.

Desperate for answers, my husband and I searched for someone knowledgeable to help us. We found a lawyer who specialized in foodborne illnesses. Given that Kevin had eaten three hamburgers in the week prior to his illness, our attorney suspected a meat contamination. In November, under the Freedom of Information Act, we requested the DNA fingerprints from the USDA for all meat recalls in 2001. It took six months, and several threats of lawsuits, to obtain that information.

In 2003, after receiving and reviewing all the documents, we discovered that the PFGE pattern (or DNA) of Kevin’s E. coli matched that of a meat recall from August 2001. The recalled meat had been produced by a subsidiary of one of America’s largest agribusinesses. A year before Kevin’s illness, that company had failed the USDA’s Salmonella test — for the second time. This is significant; under USDA’s HACCP new food inspection system, failing a Salmonella test is an indicator that other foodborne pathogens are more likely to be present. And, according to USDA regulations, plants failing the Salmonella test three times are supposed to be shut down.

Not surprisingly, that same company had also tested positive in a in December 2000 random E. coli O157:H7 test, resulting in a recall of 1.1 million pounds of ground beef. USDA performed another random E. coli O157:H7 test shortly after that. While that one was negative, a July 2001 outbreak in northern Illinois and Chicago was traced back to the same offending plant. 

As a result, USDA performed a non-random test for E. coli O157:H7 on August 2, 2001, and it was positive. That result led to 25 days of USDA-industry negotiations, after which the plant finally recalled 530,000 pounds of ground beef. The PFGE pattern (or DNA) for Kevin’s E. coli matched the PFGE pattern of the recalled meat. 

Unfortunately, having a PFGE match is NOT sufficient evidence to prove that a producer is responsible for a particular illness. We needed to show that Kevin had consumed the recalled meat. We knew that two of the three burgers he’d eaten the week before he became ill were made from meat purchased at the same retailer. To determine if the retailer had received its meat from the producer that had issued the recall, we would need to see the distribution records.

Again, we were in for a shock. The USDA considers those records proprietary, and would not give them to us. We were forced to ask the meat producer to provide us with its records, but the producer was unable to locate those records, so we could not determine whether the suppliers/retailers had received their meat from that producer. Not giving up, we shifted our approach, and asked the retailer to provide its records. However, as there is no law requiring retailers to share such records, they refused. After much consideration and deliberation, we felt we had no other choice; in July 2004, we filed a lawsuit so we could subpoena the producer’s and the retailers’ records. We did not do this lightly. We believe we owed it to Kevin – and to our surviving children – to find out what had happened to our son.

Despite our best efforts, we were ultimately not able to prove conclusively that the recalled meat had caused Kevin’s illness, and we dropped our lawsuit. It is hard knowing that those responsible for producing the defective product that killed our child will not be held accountable. Some people said we were interested in the money but that’s not true. We just wanted to know what happened to our child. We wanted to prevent it from happening to other people. When all is said and done, accountability fosters responsibility.

What happened to our son is a tragedy that our family lives with every day. Unfortunately, Kevin is not alone. Each year in the United States, thousands of Americans suffer and die from preventable foodborne illness.

We refused to let Kevin’s death be in vain; we do not want another family to have to suffer as ours did. Since then, we have been dedicated to preventing serious foodborne illness. In 2006, we founded the Center for Foodborne Illness Research & Prevention. CFI has made great strides towards preventing foodborne illness—locally, nationally, and globally.

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