Madalyn (Maddy) Massabni was 19 when she died of Toxic Shock Syndrome. Her mother, Dawn Massabni, had no reason to believe her daughter was close to death. Madalyn had returned home from college to celebrate her birthday. She quickly exhibited some strange symptoms that seemed like a stomach bug or the flu. She had no idea she was experiencing the symptoms of a rare and fatal complication of a bacterial infection.
Missing Madalyn Massabni
Maddy had a smile that could light up the room, according to her mom. As a student at Lynn University in Florida, she had hoped to work backstage at high-fashion runway shows one day. “She dressed how she wanted and didn’t fear judgment. She did a little modeling and she loved it,” Massabni said. “…And her favorite thing to do was be at the beach — even in the winter, she’d bundle up. She had this contagious laugh, so when she walked in, people would say, ‘Oh, Maddy is here.'”
On her last night on earth, Maddy celebrated her birthday at dinner with her mother. But when she returned home, she wasn’t feeling well. She tried to rest up in the hopes that her symptoms would subside.
“I said, ‘We’ll go to the doctor first thing in the morning,” Massabni said. “The next morning she could hardly respond to me and she couldn’t speak. I don’t even know if she knew who I was and I called 911 right away.”
By the time the ambulance arrived, Maddy had a seizure. “I was holding her and she looked at me and closed her eyes … I was yelling, ‘I love you so much. Please don’t leave me,‘” Massabni said. “She had a heart attack in my arms and stopped breathing.”
The Night It Happened
They rushed her to the hospital where the doctors struggled to revive her. However, her health only worsened and her family decided to turn off the ventilators. Madalyn Massabni passed away on March 30 from toxic shock syndrome. Three days after her birthday. And Massabni and Maddy’s brother Georgie haven’t been the same since.
“The three of us were very close, extremely close. She would talk to Georgie several times a day. They did everything together,” Massabni said. “He had to say goodbye to his sister. I don’t know how he graduated, but he did. He went on to grad school and when I asked him, ‘Why?’ He said, ‘I want to make Maddy proud. It’s been torture and hell since the day she left me,” she added. “I miss her so much. I miss hearing, ‘I love you, Mommy.’“
What is Toxic Shock Syndrome?
The worst part about Toxic Shock Syndrome is that it could be preventable. It’s a rare but life-threatening disease caused by some types of staphylococcus bacteria. Women who use tampons are at risk for this illness, although everyone could contract it from skin or surgical wounds.
But in the case of Maddy, she was on her period and wearing a tampon when the symptoms set it. Therefore, doctors stated that TSS was her cause of death. But she had no reason to believe that she was in any kind of danger. Because of this, Massabni created a 501C3 foundation, Don’t Shock Me, to educate women about TSS and how to use tampons properly. They speak at schools and universities to spread awareness all in Maddy’s memory.
“The tampon, if it’s left in for an extended period of time, unbeknownst to them, it can start to grow the staph-like bacteria, which can produce the toxin and it’s in an area that can go right into the bloodstream into the body and make them very sick,” Dr. Deven Kumar at Delray Medical Center’s satellite emergency department. [2]
Massabni is also campaigning for more prominent warnings about TSS on tampon boxes, and the symptoms and signs of the disease on the inside flap. Right now, the list is on the paper insert that many people trash without reading.
“There are [bold] warnings for things like cigarettes, alcohol, and drugs — we want tampons to have those same type of warnings,” Massabni said. “It’s a horrible death that can be prevented. Families don’t recover from this. I want her back.”
Symptoms of TSS include:
- A sudden high fever
- Low blood pressure
- Throwing up or watery stools
- A sunburn-looking rash
- Headaches
- Muscle aches
- Red eyes, throat, and mouth
- Confusion
- Seizures [3]
Once these symptoms appear, remove the tampons (or menstrual sponge, cervical cap, or diaphragm) immediately then contact medical help. Remember TSS could also be a result of an infected wound in any area of the body. A doctor may take a blood or urine test, swab the vagina or throat, or a CT scan or X-ray to check if the infection is spreading. Then they may prescribe antibiotics or medication for low blood pressure or other care.
To prevent TSS:
- Change a tampon ever 4–8 hours (wearing a low-absorbency tampon could help with this)
- Cleaning your hands thoroughly when inserting tampons and menstrual cups
- Keep cuts and surgical wounds clean, sanitized, and change wrappings often [4]
Because the early symptoms of Toxic Shock Syndrome are often misdiagnosed as the flu or stomach bug, it could delay treatment, ending in death or organ failure. Awareness of this disease could prevent this.
“I know Maddy would be really grateful for lives saved,” Massabni said. “If she had made it through this, she would’ve been doing exactly what I’m doing.”