After Rory Staunton fell at the gym and cut his arm in March of 2012, the 12-year-old became feverish and vomited during the night, complaining of a sharp pain in his leg. When his parents called his pediatrician the next day, she wasn't worried. She said there was a stomach virus going around New York City, and his leg pain was likely due to his fall.
However, she advised his parents, Orlaith and Ciaran Staunton, to take the youngster to the emergency department because he might be dehydrated. There hospital workers did some blood work, gave him fluids and sent him home.
The next day Rory's pain and fever were worse. His skin was mottled and the tip of his nose turned blue. The Stauntons raced back to the hospital, where he was admitted to intensive care. The diagnosis: septic shock. Rory was fighting a system-wide infection that was turning his skin black and shutting down his organs. On Sunday, four days after he dove for the ball in gym class, Rory died.
"It was frightening to think that something could kill my son so fast and it would be something that I had never heard of," said Orlaith Staunton.
She's not alone. Sepsis kills more than 250,000 people every year. People at highest risk are those with weakened immune systems, the very young and elderly, patients with chronic diseases such as diabetes, cancer or kidney disease and those with illnesses such as pneumonia or who use catheters that can cause infections. But it can strike anyone, even a healthy child like Rory.
Sepsis is a body's overwhelming response to infection. It typically occurs when germs from an infection get into the bloodstream and spread throughout the body. To fight the infection, the body mounts an immune response that may trigger inflammation that damages tissues and interferes with blood flow. That can lead to a drop in blood pressure, potentially causing organ failure and death.
Yet many people don't know about sepsis. Meanwhile, health care providers struggle to identify it early. There's no simple diagnostic test and many symptoms -- elevated heart and respiratory rates, fever or chills, pain -- are common ones that are present in many conditions.
Now, a growing number of doctors, hospitals, patient advocates and state and federal policymakers are pushing to educate consumers and clinicians and ensure procedures are followed that focus on prevention and early detection.
The Stauntons established a foundation to raise awareness about the deadly infection, and in 2013 New York became the first state to require all hospitals to put in place procedures for its early recognition and treatment. This month, Illinois Governor Bruce Rauner signed a law requiring similar actions by hospitals in that state.
The federal Centers For Disease Control and Prevention is scheduled to release a study Tuesday about sepsis as part of an effort to draw attention to the importance of prevention and early detection of the disease.
"Early treatment is vital," said Dr. Anthony Fiore, chief of the epidemiology research and innovations branch at the CDC's Division of Healthcare Quality Promotion. "It's an emergency that you need to deal with, like heart attack and stroke."
When sepsis advances to septic shock, characterized by severely low blood pressure, each hour of delay in administering antibiotics decreases the odds of survival by an average 7.6 percent, one study found.
In 2013, sepsis, or septicemia as it's sometimes called, accounted for nearly $24 billion in hospital costs, the most expensive condition treated. Up to half of people who get it die. Many cases are related to health care, such as catheter use or an infection acquired in the hospital, but large numbers come from outside the hospital, too.
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As the front line in identifying these cases, emergency departments typically have sepsis protocols in place to screen for the disease.
"The work you do in those first three to six hours in the emergency department makes more difference in cost than the whole next several weeks in the ICU," said Dr. Todd L. Slesinger, emergency medicine residency program director at Aventura Hospital and Medical Center in Aventura, Fla., who co-chairs a task force on sepsis at the American College of Emergency Physicians, which has developed a tool to help emergency department staff screen and treat the condition.
Last fall, the federal Centers for Medicare & Medicaid Services started requiring hospitals to measure and report on efforts to screen for and treat the illness. In addition, Medicare sets penalties for a variety of hospital-acquired conditions, including high rates of post-operative sepsis.
Patient advocates and policymakers agree that patients themselves are key to improving its prevention and early detection. Good hygiene can help prevent sepsis, including cleaning wounds. If someone gets injured, look for signs of sepsis, including rapid breathing or heart rate, confusion, fever or chills and pale or discolored skin.
Don't assume health care providers have it covered, experts advise. If you or someone you're caring for has these symptoms, ask the health care provider directly: "Do you think it might be sepsis?"
Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.