A 13-Year-Old Girl Died of Toxic Shock Syndrome After Doctors Misdiagnosed Her

Jemma-Louise Roberts died after using a tampon. The 13-year-old girl, whose family was later told had toxic shock syndrome, reportedly visited a doctor for vomiting and diarrhea when she fell ill in March—but her symptoms were dismissed as a simple stomach bug. A week later, she was dead.

Now, in honor of Sepsis Awareness Month, her mother Diane Roberts is speaking to the media with a message: toxic shock syndrome, or TSS, is not just a thing of the past.

In the early 1980s, fears about TSS were rampant. In 1980, 813 cases of TSS in menstruating women were reported to the Centers for Disease Control—38 of which were fatal. Tampon manufacturers faced lawsuits, and the popular super-absorbent Rely tampons were soon pulled off the market. By 1982, tampon manufacturers were required by law to include a warning on their products: "Attention," the label read. "Tampons are associated with Toxic Shock Syndrome… a rare but serious disease that may cause death."

But TSS hasn't gone away. Earlier this year, Los Angeles model Lauren Wasser announced her lawsuit against Kotex after she had her right leg amputated from complications of TSS.

Though more than 30 years have passed since those initial scares, Philip Tierno, a professor of microbiology and pathology at the New York University School of Medicine, says that TSS should worry tampon users. The disease is rare, he adds, but tampon companies could still push for even greater safety with their products.

In the 1980s, Tierno was at the forefront of linking TSS with the synthetic materials used in tampons—prompted after his wife showed him an article in Cosmopolitan about women getting rashes, vomiting, and having fevers after wearing tampons."[The women] seemed to have a few things in common," Tierno told me. "They used tampons, they were menstruating, and they had staph."

He said his wife turned to him and asked, "Aren't you an expert in staph? Isn't there something you can figure out?'

So Tierno looked at samples of the then-popular Rely tampons, which were made of synthetic materials that turned into a "jellied mass" when liquid hit it, creating a "petri dish" of sorts for Staphylococcus aureus, or staph bacteria. Tierno had a breakthrough: This was what was causing the problem.

In the late 1980s, Tierno and his colleague, Bruce Hanna, published a study that showed a link between TSS and several of the synthetic materials used to make tampons. Those materials—many of which have since been banned—helped create an ideal environment for staph toxins to multiply and potentially spread into the bloodstream.

For the 33 percent of people that carry staph, TSS can quickly become a problem.

"I always sort of make the analogy of the D-day invasion on Omaha Beach," said John Townes, medical director of Infection Prevention and Control at Oregon Health & Science University. "You had to get a certain amount of troops landing on the beach to establish a beachhead, and once they had amassed enough people they could move in and start throwing bombs and grenades at the enemy."

Most people have small numbers of staph bacteria on their skin and it's no problem, Townes explained. "But when you get a large number of them reproducing all at once," he added, "those bacteria can start producing toxins that make you sick."

Townes was clear: Tampons, themselves, don't cause TSS, and good hygiene reduces a lot of the risk. But for young girls like Roberts, TSS—and specifically TSST-1, the toxin produced by staph—can pose more of a threat.

As a person gets older, the body usually produces a protective antibody that keeps them from being as susceptible. But "if that person is infected with a strain that produces TSST-1 and they don't have an antibody, they can get a full blown syndrome," Townes said.

Because of that, Tierno said,doctors should know to ask further questions of an adolescent girl with flu-like symptoms. He said Roberts should have been asked questions like: "Are you menstruating? And if you are, are you using tampons? And if so: stop."

"TSS is a disease of the youth," Tierno added.

In his book, The Secret Life of Germs, Tierno writes that only half of teenage girls under age 16 have the appropriate antibodies to fight off TSST-1. And if they wear a tampon for too long—maybe nine, ten hours as they sleep in on a Saturday morning—the risk of TSS increases.

"Most people, when they put a tampon in, don't leave it in for a long period of time," Townes said. "The idea is that the staph that are collecting the vaginal area do not have time to multiply."

Though the likelihood of having that protective antibody increases with age, the threat doesn't completely disappear. Women in their 40s have died from TSS. This March, US Representative Carolyn Maloney, a Democrat from New York, introduced a bill called the Robin Danielson Feminine Hygiene Product Safety Act, named for a woman who died at age 44 after using conventional tampons.

So if people know that tampons made with synthetic materials create a haven for staph toxins, then why not make them from all cotton? Tierno said that's a question he's been asking for decades—especially because, he added, there has never been a TSS case from all-cotton tampons.

"Many people think that with the current tampons there is no problem," he said. "They think, 'That's gone. It's a thing of the 80s.' It's not. To this day, I testify in death cases."

Diane Roberts has the same message. "My husband had never heard of TSS," she told the Manchester Evening News this week. "If one dad reads this and his daughter falls ill, it could save her life."

Knowing that a woman will use as many as 16,800 tampons in her lifetime, Tierno said he continues to put pressure on tampon manufacturers to convert to an all-cotton product. He said he's even asked companies to add a skull and crossbones to their labels.

He points to Maloney, who has been pushing for increased tampon safety regulations since 1997.

"She reintroduces it again and again and again," Tierno said. "If men had vaginas this bill would have been passed the first time. That's the truth."

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