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Back from the Brink: Families of children who contracted E. coli count blessings — and bills

Lane County officials breathed a sigh of relief in October when 23 plaintiffs - mostly parents of children who contracted E. coli infections at the 2002 Lane County Fair - dropped their lawsuit against the county, two weeks before trial.

They no doubt relaxed again earlier this month when the statute of limitations deadline expired, barring any of the victims of the outbreak - including the lone holdout from the lawsuit - from suing the county again in the matter.

But if the county, free from the legal threat of financial obligation for the episode, now can put the unpleasantness behind it, many of the families whose children endured life-threatening cases of the illness say they cannot.

Some still struggle financially because of the out-of-pocket expenses they incurred for medical and other services during their children's treatment at hospitals in Eugene or Portland. Even more serious, at least four of the dozen children hospitalized following the E. coli outbreak face the possibility of future kidney failure - even the necessity of an organ transplant - as they approach adulthood.

The parents also say that despite improved signs and the installation of hand-washing stations at the Lane County Fair since 82 people contracted E. coli traced to the fair two years ago, they fear another outbreak may happen eventually.

Because the Lane County outbreak may have been caused, at least in some cases, by airborne bacteria directly breathed in or ingested by those taken ill, relying on hand-washing isn't enough to prevent future tragedies, these parents believe. One way to curb the disease might be to exclude cud-chewing animals - E. coli epidemics nearly always trace back to cattle - from county and state fair exhibitions, where there are so many infants and children, who are particularly susceptible to E. coli.

"Until you stand in an intensive care unit, holding your 18-month-old and not knowing if he will live or die, you can't know what it was like to go through this," said Tom Keating, whose twin toddlers contracted the illness at the fair, Sean mildly and Ryan severely.

The experience "reshaped my views of a lot of things," Keating said, including laws such as those in Oregon "that shelter public agencies from liability so that these tragedies can keep on happening."

Some county officials acknowledge they feel uncomfortable with laws that protect the county while leaving families to bear the burden of the outbreak.

Several said they would consider helping the families financially, if that's legal.

From the brink of death

Sitting on her mother's lap reading a book or romping with her father and brother in the family's ranch-style Eugene home, 4-year-old Carson Walter doesn't look like a child who lay at the brink of death two years ago.

Her white-blond ringlets and wide eyes belie a streak of mischief and a preschooler's knack for vaulting from tantrums to giggles in the blink of an eye. A pink plastic Barbie vanity table - a favorite gift from her Sept. 28 birthday - occupies a corner of the living room.

Bill and Shelly Walter say they cherish the moments they spend with their daughter, Carson, who spent 31 days in intensive care in 2002. "She has the worst long-term prognosis of any of the children who got E. coli at the Lane County Fair," Bill Walter says.

Her mother, Shelly Walter, admits she probably treats Carson differently after the little girl spent 31 days in intensive care at Portland's Doernbecher Children's Hospital, suffering through weeks of severe abdominal cramps, bloody diarrhea and 17 rounds of kidney dialysis.

Carson still takes medication for high blood pressure - a common aftereffect of severe E. coli infection - and has not regained full kidney function.

"When I'm faced with a situation where I need to discipline her, I always stop and think that I'm lucky to have her at all," Walter says. "I know I'm softer on her than I would have been otherwise."

Bill Walter says he thinks constantly of what his daughter went through and what she might have to endure in the future.

"We don't talk about it with other people as much as we used to, but I think about it multiple times every day," he said. "She has the worst long-term prognosis of any of the children who got E. coli at the Lane County Fair. We've been told she has up to an 85 percent chance of needing a kidney transplant by the time she's an adult. We just don't know how all of this will affect her ability to get an education or work or live a normal life."

The family had a good health insurance policy that covered most of the $125,000 in medical bills for Carson's care and recovery, but they've paid at least $14,000 out-of-pocket, Bill Walter said.

"We were fortunate - it was a financial burden at the time of her illness, but we were able to handle it," he said. "But there's a lot of financial stress in not knowing what the situation will be for her later."

The Walters and other parents worry about what would happen if they change jobs and their health insurance changes. They also wonder who will pick up the costs if kidney ailments crop up after the children become adults.

"My husband couldn't even think of quitting his job now or moving to another one - we have to keep our group insurance," said Stacey Harris, whose daughter Jessica contracted one of the most severe E. coli infections at the Lane County Fair.

The family still hasn't recovered from the out-of-pocket expenses associated with Jessica's care, Harris said.

"It wasn't just the co-pays and medication, it was also all the gas and lodging and food. It put us way behind, and we've never been able to catch up - when you can't pay on time, you end up paying even more. I get calls from bill collectors all the time."

Because of her family's straitened circumstances, Harris now qualifies for WIC, the federal women, infants and children's program that provides vouchers for nutritional foods for low-income families.

"This has been a huge emotional stress, a huge financial stress," she said. "And then to find out the lawsuit had to be dismissed was just crushing. I haven't gotten over that yet."

Dropping the lawsuit

Advising his clients to drop their suit came hard to Seattle attorney William Marler, but after much research and dozens of depositions of Lane County officials, members of the affected families and experts in the field of E. coli transmission, he saw no other choice.

In 2002, when the Lane County outbreak happened, "airborne or dustborne transmission of E. coli was still a novel concept," Marler said. "Whether that's exactly how these people got the infection, we just don't know. Some washed their hands, others didn't. Some touched animals, others didn't. Some of the children walked through the barns, some never got out of their strollers. We just couldn't pinpoint, `This is what the fair didn't do, this is what they should have done.' Without that, we couldn't win a lawsuit."

He and the families wanted more than just a financial settlement.

"Most state, county and local entities are either immune from lawsuits or have caps on awards," Marler said. "There's very little economic incentive for them to change. I'm not suggesting that all award caps should be removed, but I think government officials should look at these situations as if it were their grandkids who had the problem."

If they did, Kevin Closson believes, it might cut E. coli outbreaks in the future. Closson's daughter, Madeline, then 3, spent two weeks in Legacy Emanuel Hospital in Portland, undergoing daily dialysis treatments for a week and requiring blood transfusions.

"During dialysis ... they suck the blood out, clean it up, cool it down and put it back in," Closson said. "It takes several hours, which is one thing for an adult but way too much for a little child, so they have to put them under anesthesia to do it. At one point, in one day, Maddy was under three times. The money wasn't as big a thing to us as witnessing what all that did to our 3-year-old's body."

Like several of the other children, Maddy experienced such violent diarrhea that she had rectal prolapse, a condition in which intestinal tissue becomes expelled along with feces during the severe muscular spasms.

"Do you know what they do about rectal prolapse?" Closson asked. "They get the tissue back inside, and they tape the buttocks shut. Do you know what that would be like for a little kid, and what it's like when they have to tear that tape off again?"

Closson wants public officials to know all this.

"By participating in a lawsuit, I just wanted those goofballs (county officials) to do two things: to cover the monetary damages and to belly up to the bar, take their licking and then get the news out so this won't happen to other children in the future," Closson said. "If they'd had to pay out a couple million dollars to cover the families' expenses, then fairs all over the country might start paying attention."

Lane County commissioners are cautious about the legal and ethical aspects of the case.

Bill Dwyer said the issue "kind of puts the county in a bind."

"It bothers me that kids got sick at the fairgrounds, but it was something we couldn't foresee - it was a crazy, unfortunate event," he said. "But I wouldn't be averse to having the families who have suffered hardship to appeal directly to the board (of commissioners) to see if there's some way we could help. We have no legal obligation to help, but I believe government has moral obligations to its citizens."

Peter Sorenson said he also would be willing to take a look at the county's responsibilities with regard to the children most damaged by the E. coli outbreak.

"It becomes an issue of protecting the lawful position of the county and the right of taxpayers," Sorenson said. "But that doesn't mean we shouldn't look at the compassionate aspect of the situation. I would want to get a written opinion from the (state) attorney general to see what we have the right to do."

Commissioners Bobby Green, Don Hampton and Anna Morrison worry about the precedent that would be set if the county offered financial help to families, Green calling it a "humongous risk" and Morrison calling it a "Pandora's box that could be dangerous to open."

Green said county officials don't want to seem "insensitive."

"We have done things to make sure this doesn't happen again. From the legal standpoint, there's not much more we can do," Green said. "As for the moral issue, that's very different. We are sorry this happened. People were harmed, and we're not trying to find a way out of acknowledging that. It's been a tough situation."

Morrison fears a big burden to the county.

"I'm distressed that (the outbreak) happened, but there are just some things we have no control over and that we're not legally responsible for," Morrison said. "For us to be sorry, I have no problem with that. But if we go beyond the things we can do to make the fairgrounds operation as clean as possible, then where does it end? How much are we talking about, and for how long?"

Expert on E. coli

Attorney Marler - who says he's spent 11 years "representing little kids with E. coli" - believes that neither society as a whole nor fair operations around the country have been paying enough attention to E. coli 0157:H7, the strain that infected Lane County fairgoers two years ago.

"The fact that these outbreaks happen as often as they do, you eventually have to come to the conclusion that we're not doing enough," he said. "This should never have happened to these little kids." For the families of those most severely affected, "it will be a lifelong matter of keeping their fingers crossed."

This particularly virulent strain of E. coli "was virtually unknown before the early 1980s"; some scientists theorize it mutated because of antibiotic-laced cattle feeds, Marler said.

About half of the E. coli-infected children he sees - usually a dozen or more each year - require dialysis that puts them at risk for long-term kidney ailments, says Dr. Randy Jenkins, director of pediatric nephrology at Legacy Emanuel Hospital in Portland.

"Of kids who have Hemolytic Uremic Syndrome, 38 percent will have the risk of low kidney function or failure," Jenkins said. "They also have a greater risk for diabetes, gallstones and bowel stricture. The longer the time that they don't produce urine during the infection, the greater the risk. If it's more than 10 days, they're much more likely to experience kidney failure in the long term."

E. coli "is really a toxin problem," Jenkins said. The bacteria damage kidney filters that cleanse the blood of waste. "Fortunately, we're built with significant reserve - we can get by with one kidney or with diminished function in both kidneys as long as it doesn't go below 50 percent," he said.

However, kidneys that don't function normally must work harder, and the pressure placed on them can create more scarring of the remaining filters, leading eventually - sometimes in the range of 10 to 20 years - to acute kidney failure, Jenkins said.

Last month, 40 people contracted E. coli at the North Carolina State Fair in Raleigh, with more than 100 additional cases under study. Contact with animals in a petting zoo appears to be the most likely cause.

The list of E. coli 0157:H7 outbreaks has grown long since the strain first became identified in the early 1980s.

Lane County's episode constitutes one of the largest; of 82 people sickened, 74 received firm diagnoses. About two-thirds of the cases involved children younger than 6; 22 required hospitalization, and 12 developed Hemolytic Uremic Syndrome, a complication involving some degree of kidney failure that occasionally can be fatal.

Marler's research found E. coli outbreaks in 1998 at the Puyallup Fair in Washington state; a fair in Washington County, New York, in 1999 where 781 people became ill and two died because of a contaminated water supply; at a large agricultural fair in Ontario, Canada, in 1999; a petting zoo in Snohomish County, Wash., in 2000; the Medina County (Ohio) Fair, also in 2000; and county fairs in Wisconsin and Ohio in 2001.

However, fair officials resist the idea of excluding cud-chewing animals from county and state fair exhibitions.

"I gave a talk at the University of Oregon Law School in a tort class and talked about my work with E. coli outbreaks at fairs, and it was amazing how many students stood up and said, `You're going to ruin county fairs for everybody,' " Marler said.

They don't seem to understand that children who have suffered severe Hemolytic Uremic Syndrome "never get their lives back," he said.

"Somehow, we continue to divorce ourselves from the reality of what these outbreaks do to little children.

"It's time to take a deep breath and ask ourselves, `Is this the right thing to do, given the risks?' "

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