Boy’s Death from Misdiagnosis Points Up CDC’s Inadequate Sepsis Information

More than a year ago, we wrote about Rory Staunton, a boy in New York who fell into septic shock because a hospital misdiagnosed his problem as a stomach bug.

Septic shock is a deadly result of sepsis, an overwhelming immune response to infection that triggers a host of responses that, left unchecked, lead to organ damage. According to the National Institutes of Health, every year about 750,000 Americans get sepsis, and as many as half of them die – far more than the number of U.S. deaths from prostate cancer, breast cancer and AIDS combined.

Rory Staunton was one.

The New York Times followed his family’s sad story, and last week caught up with his parents, who had more troubling news: One day, they visited the A to Z index of disorders and health issues on the website of the Centers for Disease Control and Prevention. Seeking information about sepsis, they turned to the S page and found … nothing.

How could something so common and so deadly not deserve coverage in one of the country’s primary resources for public health information?

Sepsis is not well understood, but it is well known that the sooner treatment begins, the better the chances of survival. After Rory’s death, the Stauntons waged a successful campaign for the New York State Department of Health to issue new regulations requiring hospitals to adopt techniques for early identification and treatment of sepsis. As The Times reports, they went effect at the end of 2013, and are among the most rigorous regulations in the country.

Now the Stauntons are trying to get the CDC to catch up. In January, they wrote to Dr. Thomas Frieden, director of the agency, telling him that “The C.D.C. needs to demonstrate a leadership role in the education and treatment of sepsis,” according to the newspaper, adding that the CDC was “negligent in their duty to inform the public and to insist on sepsis protocols being in place at all medical facilities throughout the United States.”

They got his attention. They met with Frieden, and brought along Dr. Martin Doerfler, associate chief medical officer for the North Shore Long Island Jewish Health System, which includes 16 hospitals and has reduced its mortality rate from sepsis by half in the last five years.

“The CDC has a whole pamphlet on children with cancer and serious infection,” Doerfler told The Times. “And they die of septic shock. The words ‘septic shock’ aren’t used.”

The protocol for timely treatment of sepsis is to administer antibiotics when someone shows symptoms of its early stages, which occurs before the presence of a bacterial infection can be confirmed. (Antibiotics work only on infections caused by bacteria, not those caused by a virus.)

Confirming a bacterial infection can take as long as 48 hours, and, as The Times explains, the mortality rate from sepsis increases by 7 percent for every hour that antibiotic treatment is delayed. Treatment is complicated by the growing awareness that antibiotics are losing their effectiveness because too many people who don’t need them get them anyway, or are given the wrong ones. (See our blog later this week, “Why Doctors Overprescribe Antibiotics and What to Do About It.”)

So the question arises: Is reluctance to overprescribe antibiotics in conflict with protocols for treating sepsis?

Absolutely not, Frieden told The Times, although he acknowledged that there could be confusion. But to address the threat of sepsis, what New York State was doing, he said, made sense: Start the antibiotics, and then look at the results of the blood tests to see if they should be adjusted or stopped. It’s just too life-threatening a condition to ignore.

The CDC plans to create a web page on sepsis, and consult with research centers and with New York State on the results of regulations. You have to wonder what’s taking so long. And also to hope that nobody else has to lose a child because the threat went unrecognized.

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