Just days after doctors successfully removed a tumor from Bailey Quishenberry's brain, the 14-year-old was spiraling downhill, delirious and writhing in pain from an entirely new menace.
Her abdomen swollen 10 times its normal size and her fever skyrocketing, Bailey began wishing she could die, just to escape the agony.
Bailey had contracted a potentially fatal infection called Clostridium difficile, or C. diff, that ravages the intestines. The bacteria preys on people in hospitals, nursing homes and other medical facilities -- the very places patients trust to protect their health.
A USA TODAY investigation shows that C. diff is far more prevalent than federal reports suggest. The bacteria is linked in hospital records to more than 30,000 deaths a year in the United States -- about twice federal estimates and rivaling the 32,000 killed in traffic accidents. It strikes about a half-million Americans a year.
Yet despite a decade of rising C. diff rates, health care providers and the government agencies that oversee them have been slow to adopt proven strategies to reduce the infections, resulting in tens of thousands of deaths and illnesses that could have been prevented, the investigation shows.
"People are dying needlessly," says Christian John Lillis, a New Yorker who lost his 56-year-old mother, Peggy, to the infection two years ago. "It's outrageous."
Indeed, while the medical community has cut rates for virtually all other health care infections in recent years, C. diff hovers at all-time highs.
"Looking at the data for C. diff and looking at what's being presented at infection control meetings, we're not doing a very good job," says William Jarvis, who spent 17 years heading the health care infection division at the U.S. Centers for Disease Control and Prevention. "We know what to do (to lower rates). It's not rocket science. And we know the barrier is cost."
To assess the C. diff epidemic, USA TODAY conducted dozens of interviews and reviewed an array of state and federal data, government studies and academic papers. The reporting revealed:
Deaths and illnesses are much higher than reports have shown. In March, the CDC said in a report that the infection kills 14,000 people a year. But that estimate is based on death certificates, which often don't list the infection when patients die from complications, such as kidney failure.
Hospital billing data collected by the federal Agency for Healthcare Research and Quality shows that more than 9% of C. diff-related hospitalizations end in death -- nearly five times the rate for other hospital stays. That adds up to more than 30,000 fatalities among the 347,000 C. diff hospitalizations in 2010. Thousands more patients are treated in nursing homes, clinics and doctors' offices.
"We're talking in the range of close to 500,000 total cases a year," says Cliff McDonald, a C. diff expert and senior science adviser in the CDC's Division of Healthcare Quality Promotion. And annual fatalities "may well be as high as 30,000."
Health care facilities have stopped short of doing what's necessary. Many hospitals and nursing homes lack programs to track and limit the use of antibiotics that allow C. diff to thrive. And studies show that patients' rooms often aren't cleaned sufficiently.
During the recession, many health care facilities cut spending on infection control and housekeeping, and they often lack a tightly coordinated approach to track and kill the bacteria.
C. diff is "a big concern," but limited Medicare and Medicaid reimbursements strain budgets, says Nancy Foster, the American Hospital Association's vice president for quality and patient safety. "Nurses on the front line, pharmacists that provide crucial medication, therapists that provide hands-on treatment, cleaning technicians that need to be there to keep rooms clean and infection rates down -- there's no good place to cut."
Other countries are racing ahead of the U.S. in battling the bacteria. In England, the government requires hospitals to report all C. diff cases, underpinning a regulatory campaign that has slashed infections more than 50% since 2008. A new C. diff reporting rule for U.S. hospitals isn't scheduled to take effect until 2013.
England and other European countries also require health care institutions to have antibiotic control programs and meet targets for reducing C. diff. There are no such rules for U.S. facilities: The federal government doesn't track antibiotic use in hospitals, nursing homes and other care settings, and there is no penalty under Medicare and Medicaid for facilities that have high C. diff rates.
Thirty-four states now require hospitals to publicly report their rates of infections, but fewer than a quarter of those include C. diff, according to an analysis by Julie Reagan at HAI Focus, an organization that studies health care infections. Reporting requirements for nursing homes are even less common.
In 2009, the U.S. Department of Health and Human Services launched an "action plan" to reduce six high-priority infections, including C. diff. Infection rates for five of those have dropped significantly, including methicillin-resistant Staphylococcus aureus, or MRSA.
Rates for C. diff, targeted for a 30% reduction by 2013, haven't budged.
"As it relates to C. diff, absolutely, we have a lot of work to do," says Don Wright, deputy assistant secretary of health and leader of the prevention initiative. "It's important to take lessons learned. We will begin to see a reduction if those are followed closely."
One lesson came in 2003.
That's when the Environmental Protection Agency, which regulates hospital disinfectants, learned that none of its approved products actually killed C. diff spores -- though many claimed on their labels that they were effective against the bacteria. Five years passed, with C. diff rates surging, before the agency ordered manufacturers to remove the claims and began to identify new disinfectants that work.
"The agency blew it," says Jim Jones, EPA's acting assistant administrator for the Office of Chemical Safety and Pollution Prevention, which handles disinfectant regulation. "We missed something we totally had the capacity to catch."
'I couldn't move'
Like most C. diff patients, Bailey Quishenberry's symptoms began with severe diarrhea. Within days, her intestines were shutting down. Her colon was so swollen that it pushed pressure up to her lungs, making it difficult to breathe.
Bailey's doctors at California's Loma Linda University Medical Center diagnosed her with toxic megacolon, a sometimes-fatal complication that often requires removal of the colon and use of a colostomy bag.
"It was so painful, I couldn't think, I couldn't keep track of what I was saying. ... I couldn't move," she recalls. "It was like 'I wish this would be over and I could just die.'"
With a colectomy looming, Bailey's mother, Shannon, persuaded the doctors to try an unusual alternative, a fecal transplant. The goal is to repopulate the colon with healthy bacteria by implanting a feces from a relative, often via a colonoscopy. Within days, Bailey's blood white cell count fell, the swelling in her abdomen receded. After a month in the hospital, she was allowed to go home.
Bailey's ordeal would continue, but she survived. Many patients aren't so fortunate.
Regina Mulligan was diagnosed with C. diff after entering a New York hospital for heart surgery and died from complications three months later at age 83.
"When someone you love goes in for something like heart surgery, you don't expect that they'll die from an infection because they are in the hospital," says Mary Schultz, Mulligan's daughter. "At one point the doctors told us that she had C. diff, but no one ever explained what it was or told us how deadly it could be."
Kimberly Ratliff's baby girl, Charlee, lived only eight months before dying with the infection in 2010 after heart surgery. The medical community doesn't talk about C. diff because it wants to downplay the problem, she says.
"I wish doctors were more forthcoming. You don't learn about it until after it's too late."
How to attack the problem
There's no mystery to cutting C. diff rates.
The spore-forming bacteria exist throughout the environment: water, soil, human and animal feces. It typically sickens people taking certain stomach medicines or antibiotics, which diminish healthy bacteria in the gut as they attack infections. When levels of healthy bacteria get low, C. diff can take over, producing toxins that cause intense diarrhea, often with grave complications.
The germ thrives in settings where antibiotics are in wide use, and its proliferation has accelerated as a new, hyper-virulent strain has emerged over the past decade. C. diff spores spread through fecal contamination: They get on people's hands, often from bathroom fixtures, and move to other surfaces by touch, from light switches to bed rails to tables and trays. The tough-to-kill spores resist many disinfectants and can survive for months. Once they're on patients' hands, it's a short trip to their mouths -- and their intestines.
The challenge is twofold: control the use of antibiotics that allow C. diff to flourish, and prevent the bacteria's spread from infected patients via dirty hands, dirty rooms or dirty equipment.
Some U.S. hospitals have confronted those challenges head-on:
In Cincinnati, the Jewish Hospital-Mercy Health slashed its high C. diff rate by half in less than a year by adopting stricter antibiotic controls and new room-cleaning protocols. The program costs the 209-bed hospital about $10,000 a year.
In Pittsburgh, the 792-bed UPMC Presbyterian cut C. diff 71% from 2000 to 2006 with new cleaning protocols, better identification and isolation of infected patients, and antibiotic controls.
In Oak Lawn, Ill., the 695-bed Advocate Christ Medical Center reduced C. diff cases 55% by retraining housekeepers, coordinating care with infection prevention specialists, and adopting new disinfection standards for high-touch areas.
Although such strategies are well documented, many facilities don't use them, says Wright, the head of the federal infection-prevention initiative. "One of the tasks at hand is to ensure that these practices that have been shown to have success are broadly disseminated and broadly applied."
Standing in the way are concerns about costs, staffing and the complexity of creating and implementing new procedures that require interdisciplinary teams to work together.
Hospitals have cut housekeeping budgets up to 25% in recent years, according to the Association for the Healthcare Environment, an arm of the American Hospital Association. And the group's surveys show that many hospitals spend as little as 18 minutes cleaning a patient's room. That's well below the 25-30 minutes the group's studies have identified as optimal.
There is also limited tracking of antibiotics. In 2010, about 42% of infection-control specialists nationwide said their facility had no antibiotic stewardship program, based on a survey by the Association for Professionals in Infection Control and Epidemiology. Such programs typically track the use of antibiotics to ensure proper use, which can reduce opportunities for infection.
The challenge is more daunting in nursing homes, where antibiotics are prolific, staffing often is thin and it's tougher to isolate patients.
'All hands on deck'
Three weeks after Bailey Quishenberry left the hospital, her symptoms returned -- diarrhea, high fever and white blood count, distended colon. She went back in the hospital for eight days and, after another fecal transplant, her symptoms subsided and she was released again.
During those weeks at Bailey's bedside, her mother, Shannon, became a self-educated C. diff expert. She got her own bleach wipes to clean Bailey's room. She made sure visitors wore gowns and gloves. She enforced hand-washing rules.
As hospitals and nursing homes struggle with tight budgets and limited staffing, patient advocates say its critical that the public become more engaged in minimizing infection risks.
"We need all hands on deck, including patients," says Pat Mastors, whose father, Bob Stegeman, died at 76 after developing toxic megacolon from C. diff. Mastors was "shocked" when she learned how common the infection is, and she helped pass a Rhode Island law requiring hospitals to advise patients on protecting themselves.
"Hospitals don't want to tell patients the room might be contaminated," says Betsy McCaughey, founder of the Committee to Reduce Infection Deaths. The committee prints cards with steps patients can take to minimize infection risks, and they offer the cards free to hospitals, McCaughey says. But "many hospitals don't want them."
Money, staffing challenges
The big challenge in curbing C. diff is getting all the players to work together -- from health care administrators and the government regulators that guide them to doctors and nurses and the housekeeping staffs that clean up behind them.
"We're kind of in the early stages in a more coordinated response," says Arjun Srinivasan, associate director of the CDC's Healthcare Associated Infection Prevention Program. "There are simply many, many more moving parts that have to be addressed."
Other health care infections have been stemmed by ensuring that certain medical procedures are done properly. Catheter-related infections were cut by getting doctors to change protocols for installing the devices. Infections linked to surgical incisions and ventilators were reduced by getting doctors and nurses to alter practices.
Strategies to combat C. diff are more complicated and costly. Successful initiatives often require interdisciplinary teams. Pharmacists and medical directors tackle antibiotic protocols. Medical staff look at how infected patients are isolated and handled. Environmental-services supervisors review cleaning practices. And administrators have to deal with the costs.
Though infection-control programs are shown to save facilities money in the long run, Jarvis, the former CDC infection-control chief, says administrators often balk at the upfront investments because they worry about operating margins.
"Saving money is not the same as making money," he adds.
Meanwhile, "a lot of opportunities are being missed," says Christian Lillis, who set up the Peggy Foundation with his brother, Liam, after their mother's C. diff death to help curb infection rates.
In a 2009 survey of 2,000 infection prevention specialists from U.S. hospitals, 41% said their facility had cut spending on infection control. In a 2010 follow-up by APIC, 53% said their institutions were taking new steps to cut C. diff, but most said more staff was needed.
The C. diff reporting rule that takes effect next year should spur facilities to boost their efforts, says McDonald, the C. diff expert at the CDC.
"Having people track these data and report probably does the most to move this whole (prevention) yardstick forward," McDonald says. Health care facilities "care about their reputation."
But there are few other regulatory incentives for facilities to improve. The U.S. Centers for Medicare and Medicaid Services has begun reducing reimbursement to hospitals for care tied to certain health care infections it deems preventable, such as those related to catheter use. But C. diff is not on that list.
It's difficult to hold facilities accountable for C. diff because it can be impossible to know where a patient was infected, CMS spokeswoman Ellen Griffith says. As patients move between hospitals, nursing homes and other health care settings, a case diagnosed at a particular site may not have been contracted there, she adds.
That hasn't been a roadblock in England, where hospitals must meet strict targets for reducing infection rates or face sanctions. In fiscal 2011-12 through March, the country had just 18,000 C. diff cases -- 17% below the prior year.
The British experience "has shown that substantial reductions are possible," says Don Goldmann, senior vice president at the Institute for Healthcare Improvement and a professor of pediatrics at Harvard Medical School. "We can do better, and we really need to."
A 'transformation' for Bailey
Last August, three months after Bailey's C. diff ordeal began, her symptoms returned a third time. She got another fecal transplant -- it often takes several -- and improved steadily.
By last fall, Bailey's colon size was normal, her white count good, the fevers and nausea less frequent. Her gastroenterologist was impressed, telling her he'd never seen such a severe C. diff case where the patient's colon wasn't removed. In March, Bailey finally returned to school after missing six months. In April, she played Eve in an Easter play.
"We see such a rebirth in our young lady," Shannon wrote this spring in the final entry of an online journal chronicling her daughter's illness. "It is an amazing transformation."
At Loma Linda medical center, C. diff rates have declined and officials continue taking steps to reduce them, including changes in room-cleaning procedures, antibiotic controls and testing protocols for patients showing C. diff symptoms.
"We formalized things we were already doing and started adding new things," says James Pappas, patient safety officer. "We've seen our rates drop in half, so that certainly makes us happy. But if you're having one case a year, that's still a problem."
Last month, Bailey and her family went on vacation. She kayaked, hiked, swam. But Shannon kept C. diff medication close at hand. The infection still lurks in Bailey's gut, held in check by the healthy bacteria that have come back to the fore.
"I still worry," Shannon says. "If Bailey starts to get sick, she goes to deathly ill immediately.
"For us, it will be a lifestyle forever."
Contributing: Hannah Morgan
To see more of USAToday.com, or to subscribe, go to http://www.usatoday.com
Copyright 2012 USA TODAY, a division of Gannett Co. Inc.