Almost lost in the flurry of “food-freedom” comments on the Facebook page of an eastern Tennessee raw-milk dairy farm that has been linked to an E. coli outbreak is the plight of five-year-old Maddie Powell, who remains hospitalized after developing hemolytic uremic syndrome (HUS), a potentially fatal kidney disease associated with severe E. coli infections. Maddie is one of nine children, all younger than seven, who were sickened with E. coli that state health officials have linked to a cowshare operated by the McBee Dairy Farm near Knoxville, TN. Besides Maddie, two of the nine children also developed HUS but have recovered enough to go home. Raw milk is milk that hasn’t been pasteurized to kill harmful and, at times, deadly, pathogens such as E. coli, Listeria, Salmonella and Campylobacter. While raw-milk advocates believe it helps cure ailments such as asthma and various allergies, food-safety experts discount those claims as anecdotal and not based on science. They also warn of the serious risks to human health, including death, associated with its consumption. Maddie, who was admitted to the hospital on Oct. 29, has been on dialysis since Oct. 30. So far, she has had six blood transfusions, one transfusion of platelets (blood cells that help stop bleeding), and two surgeries, with another surgery planned to get her off dialysis. In a Nov. 17 email, Maddie’s mother, Cassie Powell, told Food Safety News that she had some good news to share: “No more dialysis!! We are moving out of ICU today and he (the doctor) projects another week in hospital.” Not just emotionally, but also financially, it has been a severe strain on the family, with medical bills mounting up to more than $125,000 in just two weeks. With another week in the hospital anticipated, the expenses will climb higher yet. Powell listed some of the costs:

• Room: $6,000 per day for the hospital room. (“It was at $77,000 just for the room alone so far,” Powell said in a Nov. 12 email.)
• Blood: $700 per transfusion. (Powell said she’s learned that it takes 40 donors to make up just one transfusion.)
• Platelets: $2,000.
• Chemistry: $10,000.

In addition to these expenses, Powell has had to take unpaid time off from work, and she has depleted all of her vacation time. Her husband, Scott, has to work as he has no sick time he can take. “I am trying to work some during the week to keep things going so I have some income coming in,” Powell said, who noted that she has only been home three times since Maddie was admitted to the hospital. She stays with the little girl all night, and her parents come to stay with her in the afternoon. Besides Maddie, the Powells have four other children. Fortunately, the family does have insurance, but they don’t know what the final medical costs will be. “Financially, it’s still up in the air,” Powell said. “We don’t know how we’ll fare.” A friend, Wendy Morales, who is running the “Praying for Maddie” Facebook page, has set Maddie up with Medic Regional Blood Center to receive credit for any blood donated in her name. Donors  just have to provide the child’s full name, which is Madison Delilah Powell, and say that she is in East Tennessee Children’s Hospital. Although the Powells have not asked for donations to help with medical expenses, information friends have posted on the website suggest that donations can be made through this PayPal link. Almost 1,000 people, many calling themselves “Prayer Warriors,” have made friends with Maddie on the Facebook page. Children at Maddie’s school have held a prayer vigil for her, and a benefit was to be held at her school. Her father said he has been overwhelmed by all the emotional support people have extended to the family. In addition, two mothers, Mary McGonigle and Jill Brown, whose children developed HUS from drinking raw milk in separate E. coli outbreaks — one in California and the other in Oregon — have been in touch with Powell so she won’t feel so alone as she goes through this overwhelming ordeal. Referring to McGonigle and Brown’s decision to reach out to her, Powell said, “To talk with other people who have been through this — it calms you. I had never even heard of HUS until this happened.” Food-safety attorney Bill Marler, who publishes Food Safety News, confirmed that medical costs associated with E. coli and HUS can run into hundreds of thousands of dollars. He cited one young patient whose medical bills came to $250,000 before she was discharged. Another example he gave was a young boy whose medical bills came to more than $450,000. The risks of raw milk Dairy farmer Marcie McBee, who operates the cowshare that provided the raw milk that Maddie drank, told Food Safety News that she informs cowshare members of the risks associated with raw milk. Even so, she said that, in the bigger scheme of things, “It breaks down to your choice of freedom of whether you want to drink raw milk or not.” She also pointed out that because the milk comes from a cowshare, the members own the cow, and therefore they’re not technically buying milk from the dairy. When it comes to raw milk and the freedom of choice, Tennessee Deputy State Epidemiologist John Dunn said that people may have the right to drink and eat what they want, but because children are particularly vulnerable to foodborne illnesses such as E. coli, parents should take that vulnerability into account. Powell said that she and her husband knew there were risks associated with raw milk. “To us, it wasn’t any more dangerous than going to the store and buying spinach,” she said. (In 2006, an  E. coli outbreak linked to raw spinach infected 199 persons in 26 states and killed three people.) “But this experience with raw milk has been sobering for us.” Powell said her family had decided to switch to raw milk because they didn’t like the way big dairies operate. “We wanted to avoid the chemical imprint in our bodies,” she said, referring to the genetically modified grains fed to the cows and medications such as antibiotics administered to the cows. But from now on, she said, her family will buy lightly pasteurized milk — milk that been heated to a lower, but safe temperature, and kept at that temperature for 30 minutes, a process that kills harmful pathogens — from Cruze Farm, a dairy farm in the Knoxville area. “We won’t go back to raw milk,” she said. When speaking of the McBee Dairy Farm where they got the raw milk that has been linked to the E. coli that sickened her daughter, Powell said that they don’t blame the McBees. “We know it wasn’t intentional on their part,” she said. “Marcie (McBee) is heartbroken about this, too.” Up and running again Last week, the state allowed the McBee Dairy Farm to begin offering its milk to its cowshare members again. In giving the dairy the green light, health officials said that the outbreak, which likely began in early October, is over since no new cases had been reported. In addition, the most recent testing of raw-milk samples from the dairy indicated that the milk was not contaminated — at least when the samples were taken. However, even though several raw milk samples tested negative for E. coli O157, one raw-milk sample obtained from a consumer and several manure samples collected from the farm revealed the presence of DNA for the toxin produced by the E. coli strain that causes HUS, according to a press release from the state. Tennessee Deputy State Epidemiologist Dunn told Food Safety News that the fact that all of the children who became ill drank raw milk from the dairy is “a pretty clear signal about the source.” “The data and exposure information is very compelling,” he said. Before the cease-and-desist order on the dairy could be lifted, Faith Critzer, University of Tennessee Agriculture Extension Office’s food safety expert in dairy-farm best practices, visited the farm and gave McBee some pointers on how she could improve the safeguards the dairy already had in place. (The dairy had been a commercial Grade A dairy before it began its cowshare operation.) For Mark McAfee, owner of Fresno-based Organic Pastures, the largest raw-milk dairy in the nation, this recent outbreak in eastern Tennessee adds to his frustration over the lack of solid, science-based information about the safety risks associated with raw milk and how to prevent them. Pointing out that McBee comes from a commercial Grade A dairy background, McAfee said that, before starting up the cowshare operation, McBee had never had to worry about coliform bacteria or pathogens that can make people sick. (In Tennessee, milk from commercial dairy farms is required to be pasteurized.) “But, as a raw-milk producer for people, this is a central concern,” he said. Taking a broader view of the situation, McAfee said that the outbreak illustrates the problem with a “free-for-all legalization of raw milk or cowshares without training or standards.” “This is like being a blindfolded captain of a huge ship at night with no moon,” he said, referring to the McBee’s cowshare operation. In an attempt to establish food-safety standards for raw-milk dairies, McAfee helped launched the Raw Milk Institute in September 2011. Not that McAfee hasn’t had his own problems with outbreaks and recalls. As of February 2013, his dairy has been involved in seven recalls. Even so, McAfee has faith that the raw-milk industry is evolving, with more and more science-based information to tap into. “We’ve got to work together and create safe food,” he told Food Safety News in an earlier interview. “It’s usurping the cause if you’re only thinking about your freedom. Freedom and food safety are connected. I’m free as long as I produce safe milk.” According to information from the Tennessee Department of Health, raw milk and other unpasteurized dairy products are inherently risky to consumers. They can contain harmful bacteria, such as E. coli O157. These bacteria can cause severe diarrhea and even life-threatening complications. While it is possible to get sick from many other foods, raw milk is one of the riskiest. Infants and young children are among those with the greatest risk of illness from raw milk. Pasteurization is the only way to kill many of the bacteria in milk that can make people sick. Go to Real Raw Milk Facts for information and questions and answers about raw milk.