Comments of Barbara Kowalcyk of Mount Horeb, Wisconsin
Before the Committee on Review of the Use of Scientific Criteria and Performance Standards for Safe Food, National Academy of Sciences
August 27,2002

Thank you for allowing me the opportunity to give a voice to my son, Kevin, and to all victims of food-borne illnesses.

Food safety is an issue that touches ALL Americans and most especially our children - which is why your job here today is so extremely important. I would like to tell you about one child - my child - and the impact food-borne illness has had on our family and our community.

On Tuesday, July 31, 2001, our two-year-old son, Kevin, awoke with diarrhea and a mild fever. On the evening of August 1st, we took him to the emergency room for bloody diarrhea but were sent home. By the next morning, Kevin was much sicker and was hospitalized for dehydration and bloody stools. Later, that afternoon, we were given the diagnosis: E.coli O157:H7. On August 3rd, Kevin's kidneys started failing. He had developed the dreaded Hemolytic Uremic Syndrome (HUS). Late that night he was transferred to the Pediatric ICU at the University of Wisconsin's Children's Hospital. My husband, Mike, and I spent the next eight days living in that hospital - watching our beautiful son slip away from us.

On that first Saturday in the PICU, Kevin received his first dialysis - a three-hour procedure during which he needed to keep still. That's a tall order for any toddler, so my husband, the nurse and two of our friends held his arms and legs while they talked and sang songs to reassure him for the entire treatment. Kevin spent the rest of that day and the next two crawling around a crib in agony. He threw up 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 long days, Kevin begged us to give him water or juice, but the doctors said it would only make him worse. He repeatedly asked to swim in his turtle - a pool we used at home. Kevin finally convinced us to give him a sponge bath and, as soon as the washcloth came near his mouth, he grabbed it, bit down on it and sucked the water out of it. It broke our hearts.

On Tuesday, August 7th, Kevin was placed on a ventilator and continuous dialysis. In hopes of preventing Kevin from remembering this ordeal, doctors heavily sedated him. As the medication wore off, Kevin would try to pull the tubes out so braces were put on his arms. His body began to swell. Doctors inserted tubes to drain fluid off both of his 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 was ordered to help alleviate some of his pain, but throughout it all the hospital staff remained optimistic. They said that this was typically the way HUS/E.coli kids got through the illness. But for Kevin, all of this was not enough and finally on August 11th at 8:20 pm after being resuscitated twice - as doctors were attempting to put him on a heart-lung machine - our beloved Kevin died. He was only 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.

The week after Kevin died is mostly a blur for us but we do remember some things. We remember telling our 5-year-old daughter, Megan, that her best friend - her brother - would not be coming home with us. We will never forget the look on her face. We remember meeting with the funeral home director to pick out a casket. We remember going through Kevin's closet looking for his white ring-bearer suit, so we could bury him in it. We remember walking through the cemetery looking for where we should bury our Kevin. And we remember the day we buried him.

On August 16, 2001, we didn't just bury our son. We also buried part of ourselves. We will never be the same people we were before. No parent should have to watch their child die the type of death that Kevin suffered. Our daughter will never be the same. No one should have to grow up at the age of five. Our community will never be the same. No preschooler should have to ask to go to a cemetery to visit their friend. But, it did happen to our family and our community.

Since Kevin's death, we have been researching food-borne illnesses and what we have learned has appalled us. We did not know that 46% of reported E.coli O157:H7 cases occur in children under the age of 10. We did not know that it takes less than 10 microbes to make you sick. We did not know that children under the age of five are at highest risk of developing the deadly HUS from E.coli O157:H7. We did not know that, once you get HUS, the only thing doctors can do is keep your body alive while the disease runs its course. We did not know that the survivors of HUS suffer life-long medical problems. We did not know that meat recalls are voluntary. We did not know that the USDA rarely shuts down plants that produce contaminated meat. We did not know that our meat is not safe. We did not know the risks we were taking by feeding our child a hamburger.

We should have known. Food-borne illness is a children's issue and is largely PREVENTABLE. The CDC estimates that each year 325,000 Americans are hospitalized due to food-borne illness and 5,000 Americans die. As a parent and biostatistician, I was outraged when I recently read a 1990 article from the New England Journal of Medicine (Vol. 323, No. 17, pp. 1161-1167) - written eight years before Kevin was born - that stated that the incidence of HUS from E.coli O157:H7 was 60% higher than the incidence of Reye's Syndrome for children under 5 years of age during the period between 1980 and 1984. This was BEFORE they knew that aspirin plays a role in Reye's Syndrome. Kevin NEVER had aspirin. Why didn't we know the risks we were taking by feeding him foods that are linked to serious food-borne illnesses?

There are groups that would like you to believe that it is our fault that our son contracted E.coli O157:H7 - that, if we had only practiced safe food-handling techniques, this wouldn't have happened. We DID practice safe food-handling techniques. We were always very careful about cooking our meat - we NEVER ate undercooked meat, ALWAYS used separate plates and utensils for preparing and serving meat, ALWAYS cleaned the sink and faucet immediately after cleaning meat and ALWAYS required our children to wash their hands before eating. We had done what we were supposed to do. But it wasn't enough. We needed the government and the meat industry to do their part - that is, prevent E.coli from getting into our food in the first place.

The government and meat industry CAN do more to protect us. Many argue that demanding stronger food safety policies will be cost-prohibitive. To them, I would say this: What cost do you put on a life? In May 2001, the USDA's Economic Research Service (ERS) estimated that Campylobacter, Salmonella, E.coli, Listeria and Toxoplasma gondii cause $6.9 billion in medical costs, lost productivity and premature deaths each year in the United States. That is a pretty steep figure, but it does not reflect any of the hidden financial costs that victims or their families suffer. My husband and I were lucky because we have good health insurance and we had a life insurance policy on our children. Even so, Kevin's life insurance did not cover the entire cost of his funeral, and despite our good medical insurance, neither myself, my husband or my daughter were entitled to grief counseling which we all desperately needed. It is now a year since Kevin died and we are still spending $450 per month on grief counseling. And what about the other costs - the losses you can't put a price on? Megan, now 6, has lost that feeling of security; she is terrified of being all alone. My 2-month-old, Lara, will grow up without her big brother. My husband and I can look forward to growing up with our grief - re-living what should have been every time a milestone is hit - when Kevin should have … ridden his first two-wheeler, played his first baseball game, learned to drive a car, graduated from college, gotten married, had children. And society suffers too. They lost Kevin's contributions - what he could have accomplished. The price is too high. No child should be sacrificed just so that Americans can have cheaper meat.

Losing a child is a terrible experience, but to lose a child to a PREVENTABLE situation is an outrage. This is the 21st Century; we have the knowledge and the technology to improve food safety - we just need to make it a priority. Young children are at the highest risk for food-borne disease. They depend on adults to make good decisions about their food and they also depend on us to make good decisions about how the government works. It is imperative that we demand better food safety policies in this country. Despite what some people would have you believe, food safety is NOT the sole responsibility of the consumer. While it is impossible for the government to regulate safety, it is NOT impossible for the government to set safety standards. E.coli O157:H7 is a pathogen that is harbored in the intestines of animals, in particular cows. If there is E.coli in the meat, that means that there is cow manure in the meat. Consumers didn't put it there. I don't care how thoroughly you cook it, I don't want to eat it and I certainly don't want my children to eat it. Americans want safer food. Because of what happened to Kevin, our family began a grass-roots petition asking for safer meat. We now have over 4,000 signatures. Obviously, Americans want stronger regulations governing the way food is slaughtered, processed and inspected.

As a society that values its children, we need to be more responsible for food safety at all levels. You have the opportunity to recommend objective testing and performance standards for pathogens to evaluate the safety of our food. You have the opportunity to put public health first. You have the opportunity to put our children first.

One night shortly before he became ill, I was putting Kevin to bed and we were talking about how Megan would be going to Kindergarten soon. As I kissed him goodnight, Kevin said, proudly, "When I grow up, Mommy, I'm going to Kindergarten too"…. Kevin should have had that chance.

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