E. coli Effects Can Last a Lifetime
For some who survive infections such as the one recently linked to spinach, lingering ailments include kidney damage and diabetes.
By Mary Engel, Times Staff Writer
September 24, 2006
When she was 10 years old, Brianne Kiner became the public face of one of the country's worst outbreaks of food poisoning.
Television cameras zoomed in as she left Seattle's Children's Hospital in June 1993, six months after eating an undercooked Jack-in-the-Box hamburger contaminated by E. coli. It was the same virulent strain that recently has been linked to California-grown spinach.
Doctors called her survival a miracle. What most people outside her family didn't know then — and may not realize now — was that her recovery was just beginning.
"She had to learn to walk again. Think again. Learn her colors," said her mother, Suzanne Kiner. "She had such total body atrophy that she could not chew."
Brianne suffered from hemolytic uremic syndrome, or HUS, the most dreaded consequence of E. coli O157:H7 infection and the most common cause of kidney failure in children under 18. Of the 171 cases identified so far in the current spinach-related outbreak, 27 have been diagnosed with HUS. One person has died. Two other deaths are under investigation.
Not everyone who ingests this strain of E. coli falls ill, and not everyone who becomes ill develops the bloody diarrhea described by doctors and patients as worse than kidney stones, more painful than childbirth. But about 10% of those who do — the proportion is slightly higher for children and the elderly — come down with HUS.
As the Kiners' experience shows, the consequences can be devastating, lingering far longer than most people's memories of the original outbreak.
The death rate from HUS is 3% to 5%, doctors say. Ten percent of patients survive but have long-term kidney damage and may eventually require dialysis or a transplant. The vast majority recover complete kidney function, but experts say even they should be tested regularly for abnormalities that may not be obvious but could cause high blood pressure or diabetes.
Brianne's case was so severe that just about everyone expected her to die. She was the last to leave the hospital among those stricken in the Jack-in-the Box outbreak that sickened hundreds and killed four.
During the months she was laid up, the toxin produced by the bacteria attacked her brain, kidneys and liver, putting her in a coma for 40 days. She suffered strokes and seizures. Her infected pancreas lost the ability to produce insulin, and she developed diabetes. Doctors removed part of her inflamed intestine.
Brianne doesn't remember being rushed to the hospital. She does recall awakening in the intensive care unit and spending months in bed. She remembers all too well the rounds of doctor appointments after her release and the years of physical, occupational and speech therapy that extended into high school. She was left with damaged lungs and learning disabilities.
"I had to relearn how to read," she said. "And this is embarrassing, but I had to be potty trained all over again."
The $15.6-million settlement the Kiners won in 1995 from Jack-in-the-Box provides for Brianne's support. She now lives on her own and takes community college classes part time — routine milestones for a 23-year-old, but they represent hard-won autonomy for someone stricken as severely as she was. Every three months, she visits her endocrinologist to check her diabetes, but she pronounces her health — and life — "Good."
"I have a house and I'm loving it," she said.
Her mother takes pride in Brianne's progress, calling her "blessed."
But letting go leaves Suzanne Kiner with time she hasn't had in years. Time to watch the spinach outbreak unfold and to think, "Oh, no. Not again."
E. coli is commonly found in cow manure and passed to people though contaminated food. Most strains are ubiquitous and relatively harmless.
But somewhere along the way, E. coli O157:H7 evolved the ability to produce lethal toxins that can cross the intestinal wall and enter the bloodstream.
The toxins flock to receptors in the kidneys, where they kill small blood vessels and clog waste filters. They can also harm the pancreas, liver and heart. Death is often a result of toxins infecting the brain and causing strokes or swelling.
"I lost one child to heart disease," said Dr. Richard Siegler, professor emeritus of pediatrics and kidney disease at the University of Utah School of Medicine and a widely published expert in the E. coli-caused syndrome. "The autopsy found clots in the small blood vessels of the heart. One little girl came into the ER and couldn't breathe. She had damage in her lungs from the toxin. I had a child who developed blindness. The toxin attacked small blood vessels in the retina of the eyes."
Sometimes, the damage reveals itself years later.
Each kidney has about a million filters. On average, most people lose about 20% of these filters by the time they're 80, just through wear and tear.
"Any child that's had this disease has lost some of those filters," said Dr. Sharon P. Andreoli, a pediatric nephrologist at Indiana University. "If they have lost 20% of their filters, they have the kidneys of an 80-year-old when they're 5 years old. So their kidneys have to work harder. And when they have to work harder, they wear out faster."
What saves the vast majority of children who fall ill from HUS is the resilience of the human body. Virtually nothing can be done to fight the infection once it is underway. Treatment consists of supporting the patient — from something as simple as hydration, all the way to dialysis — while the body fights off the toxins.
"Kidneys have an amazing capacity to keep you going with very little left," said Dr. David Acheson, chief medical officer for the FDA's food safety division and an expert on the kidney syndrome. "Many folks can manage all their lives with just one."
Dr. Phillip Tarr, another expert on HUS and a professor of pediatric gastroenterology at Washington University in St. Louis, agreed.
"It is an absolute horrible experience to go through during the acute stage," he said. "But many people, if not most, get through it and do fine in the future."
Michael Beverly may be one of the lucky ones.
He was just 2 1/2 years old when he fell ill in 1996 after drinking unpasteurized juice made by Odwalla Inc. In that well-publicized outbreak, one child was killed and 60 were sickened.
Michael's kidneys stopped functioning, and he went on dialysis for eight days.
Today, Michael, like most 12-year-olds, thinks he's immortal. He doesn't fret.
His mother does.
Kelley Beverly remembers that Michael was in so much pain that he couldn't bear to have the lights on in his room at Seattle's Children's Hospital.
Now he visits a clinic every other year to have his kidneys and other organs tested. So far, the results have been normal. But his mother knows that complications often accompany the growth spurt of the teenage years.
"Maybe when he's through adolescence, I can stop worrying," she said.
Amber Brister of Minneapolis is also 12. She is not quite a year from the first anniversary of the illness brought on by the 2005 Dole lettuce outbreak, one of nine E. coli outbreaks traced to lettuce or spinach grown in the greater Salinas Valley since 1995.
Amber entered the hospital Sept. 28 and was discharged on Halloween. Her kidneys failed, and she spent 18 of those 34 days hooked up to a dialysis machine. Her pancreas became infected. She couldn't eat for three weeks.
"No one knows what it's like until it happens to you, until you're the one sitting in the hospital, watching your child fight for her life," said her mother, Lori Olson. "What people don't understand about this is they think that you just get sick, and you get better, and that's it."
The single mom lost her job as a bartender to stay with her daughter in the hospital. Olson agonized over leaving a second daughter, then 15, home alone every night for a month. She too had been sickened in the outbreak but not as severely.
Now, almost a year later, there are the questions, the ones Olson has to ask and the ones she has to fret about.
"Every day you have to ask questions that, as a preteen, she's not very comfortable with, and she'd like to forget the whole thing," Olson said about Amber. "Every little thing you have to monitor. When she has a cold, you just worry and worry and worry."
Immediately after her discharge, Amber went to a clinic twice a week to check renal and blood levels. She missed day after day of school.
"We all remember our first year in junior high," Olson said. "If you can just imagine coming back three months after everybody else and being that kid who was in hospital."
Amber herself doesn't want to talk about her illness. She doesn't want the attention, her mother said. She just wants to live a normal life.
Brianne Kiner understands — and sympathizes with anyone who's suffering through the latest outbreak linked to California spinach.
"It's going to get better," she said. "It's tough right now, but it's going to get better."
More on this outbreak: Dole and Natural Selections Spinach E. coli Outbreak