Shocking and Not-so-Shocking Details about Toxic Shock Syndrome

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Dawn Massabni’s daughter, Maddy, tragically died in 2017 from menstrual toxic shock syndrome. Her mother has channeled her grief into a foundation to raise awareness. Courtesy Dawn Massabni

By Judy O’Gorman Alvarez

It gained notoriety in the late 1970s when the use of tampons for menstruation became popular. At that time cases of toxic shock syndrome (TSS), the rare, life-threatening complication of certain types of bacterial infections, dotted the headlines, sending fear through women, parents of young daughters and many others.

According to Robert A. Graebe, M.D., chairman and program director of Obstetrics & Gynecology at Monmouth Medical Center, the synthetic material and high absorbency of a tampon that allows it to retain blood products can also create a cultural medium for bacteria to grow and toxins to follow.

“It wasn’t so much bacteria was growing, as it was releasing toxins,” Graebe said. 

And despite all the press surrounding tampons, TSS doesn’t just affect those who use the product. The use of other devices, such as menstrual cups, contraceptive sponges or diaphragms and, in fact, any skin lacerations or surgical procedures and recovery practices – episiotomies or nasal packing – can put people at risk for the syndrome.

“Any wound post-op, anyone high risk immunologically, can be affected,” Graebe said. Often patients are prescribed antibiotics before and after surgeries and procedures to mitigate bacterial growth and decrease the likelihood of TSS.

What is most important is diagnosing the infection early on. Symptoms including sudden high fever, low blood pressure, vomiting and a rash resembling a sunburn, possibly on palms and soles, should send out alarms, especially if those symptoms accompany or follow tampon use. Patients can become hypotensive and, as the infection progresses, the symptoms can grow more serious. “Organs can be damaged or limbs lost,” said Graebe. And in some cases, patients can die.

“Early diagnosis, rapid treatment and the correct treatment really pave the way to benefit the patient,” Graebe said. “A rapid response is called for; it’s critical to get fluids going.”

When it comes to menstrual TSS, “It’s a problem that needs to be talked about,” said Graebe. “Part of the prevention… would require that people be aware. And that if it does happen, they should notify doctors.” 

Graebe thinks teaching awareness includes reaching menstruating females. “Pediatricians and ob/gyn, family practice doctors, nurse practitioners who encounter young females should all explain the threat (of TSS) and make them aware of it.”

He also said tampons should not be used on a continuous basis, alternating with pads – and use of one tampon should be limited to four and no more than eight hours. 

He also said one tampon should not be used for more than four or eight hours.

For Dawn Massabni of Rumson, spreading the message of TSS has become her life’s work since she lost her 19-year-old daughter Madalyn to the infection six years ago.

“We are talking about menstrual toxic shock syndrome,” said Massabni, founder of Don’t Shock Me: The Maddy Massabni Foundation for Toxic Shock Awareness, “because that’s what we lost Maddy to.” 

When Maddy, a 2016 Rumson-Fair Haven graduate, was home on spring break from studying fashion design at Lynn University in Florida, she fell ill with fever and vomiting, thinking it was a simple stomach virus.

By the time they got to the hospital, her organs had already begun shutting down.

“They put her on antibiotics,” Massabni said, “although it did not help. 

She also noted that not every symptom has to be present for it to be TSS. “Not everyone gets the same symptoms,” she said. “Maddy had no rash.” 

Massabni and her son George started Don’t Shock Me in 2018. Since then, Massabni, an EMT, has educated herself on menstrual TSS. “I’ve done that by talking to doctors, microbiologists, many educators who were kind enough to sit down with me and talk to me.”  

“We are the only foundation like this in the whole world,” Massabni said.

She has traveled the country on speaking engagements, sharing the knowledge she has gained and the importance of being aware of symptoms – and her personal heartbreak, all with the hope that if menstrual TSS affects someone, they will know what to do.

“You know your body. If you have symptoms of flu, this may not be a flu. Let the doctor know” if you’ve recently used a tampon, she said. 

TSS is often misdiagnosed, she said, noting she meets victims who have survived and that the condition is more common than many people believe. She has also met young women who developed TSS after wearing a tampon for a shorter time than physicians recommend. 

Despite improvements in tampon production, Massabni worries about carcinogen properties that may still be in many of these products. “A woman could use 16,000 tampons in a lifetime,” she said. “That’s a lot of dioxin.”

Now that Don’t Shock Me is gaining a foothold spreading its message, they have installed a board of directors and are making more headway, Massabni said. The foundation will hold a Fashion Show “Butterflies for Maddy,” May 24 at Windows on the Water at Surf Rider Beach Club in Sea Bright. 

“We are doing well, because lives are being saved,” she said. 

Yet she still grieves for Madalyn. “I cry every day,”’ she said. “She was my best friend in the whole world. I do it for her because I can’t be a mom like everyone else. This is all I can give her. She would do this herself.” 

The foundation is working to bring about legislation to help spread awareness through Madalyn’s Law that will establish mandatory, age-appropriate menstrual TSS education in grades 5-12 and warning signs in all public restrooms and on feminine hygiene vending machines in public restrooms. 

“Also, we want menstrual toxic shock syndrome discussed in well visits for girls of menstrual age,” she said.

The foundation spreads the word by offering to speak to groups of young people – schools, Scouts, anyone who will listen – emphasizing how to recognize the symptoms of menstrual TSS in themselves, in their sisters, girlfriends and others. 

They offer informational cards listing symptoms of TSS to include in period poverty packets – menstrual hygiene products distributed to low-income women.

“We want to save lives,” Massabni said. For information, visit dontshockme.org.

The article originally appeared in the May 4 – 10, 2023 print edition of The Two River Times.