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After Losing Her Daughter to Toxic Shock Syndrome, Mom Strives to Educate Women

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What should have been a wonderful birthday celebration for one New Jersey teen quickly turned into a nightmare for her family when an extremely rare infection claimed her life. But the sudden tragedy sent her family on a journey to help other young women avoid, what the girl's mother described as, the same "preventable" fate

Dawn Massabni took her daughter, then 19-year-old Maddy Massabni, out for her birthday on March 27, 2017. But Maddy began feeling ill by the end of the night.

Maddy still had a fever the next day, and Dawn assured her that they’d “go to the doctor first thing in the morning.” The next morning, when she went to wake Maddy up, Dawn said she knew something was incredibly wrong.

“She did not recognize me,” Dawn told InsideEdition.com. “I called for help. I had her sitting up. … She was having a seizure. I was very concerned.”

Three days later, Maddy died from Toxic Shock Syndrome.

Dawn described how quickly things unfolded.

“By the time they [emergency responders] got here, she had already looked at me with her eyes, and they closed, and I'm screaming at her, ‘Don't leave me, I love you. Please don't leave Mommy,’” Dawn recalled. “She died in my arms.”

While the paramedics were able to revive Maddy and rush her to the hospital, the damage was already done. The family eventually made the tough decision to turn off her ventilator.

“The pain and the sadness and torture of her not being here is completely overwhelming and it hurts,” the mom said. “I truly couldn’t believe it, how that could happen so quickly.”

After the tragic loss, Dawn and her son, George, are working to change federal regulations and spread awareness about Toxic Shock Syndrome (TSS) in Maddy’s honor, through a nonprofit organization they created called “Don’t Shock Me.”

What Is TSS?

It is a life-threatening complication caused by Stapholycoccys aureus (staph) or Group A Streptococci (strep) infections, usually affecting women who wear tampons. The bacteria can release toxins into your bloodstream, causing the body to go into shock. Left untreated, the body’s organs shut down and the results can be deadly. Women who use menstrual sponges and cervical caps, as well as women who have recently given birth, are also susceptible, officials say.

Women aged 15-25 are at the greatest risk of developing TSS.

More than one-third of TSS cases are experienced by women under the age of 19. TSS can often be mistaken for the flu, as many of the symptoms –  high fever, chills, achiness, vomiting and diarrhea – overlap. People suffering from it can also experience disorientation, skin rashes and inflamed eyes.

Dr. Adeeti Gupta, founder of Walk IN GYN Care in New York, said TSS must be quickly treated with antibiotics.

“In 24 hours it can progress unless they get quick medical attention, intravenous fluids and antibiotics,” Gupta told InsideEdition.com. “There should definitely be more awareness about Toxic Shock Syndrome out there. The packaging [on sanitary products] says it, but people really don’t know what it means.”

A Near-Death Experience

Rylie Whitten, a Michigan teen, nearly lost her life to Toxic Shock Syndrome. The 19-year-old was 15 when she decided to try out a new brand of tampons. Because she did not have experience using the brand, she took special care to change her tampon every four hours, as is usually advised. Within the first day, she began to feel sick.

“Something just felt off and we thought it was the flu, so it was about three days. It just progressively started getting worse with symptoms of throwing up,” Whitten told InsideEdition.com. "It was body aches, body shivers. I had rash, it looked like a sunburn or in the armpit area and in the groin area. And then I was throwing up."

She said she knew something was wrong because her body was “numb.”

"I eventually couldn't walk. … So, that's when we went to the ER and then that's where they took my vital signs and my blood pressure was this close to dead."

Whitten’s liver was failing. She was airlifted to Helen DeVos Children’s Hospital, where she was put in a medically-induced coma for just over a week.

During that time, her family didn’t know if she would survive. She’s grateful to have made it through and said the experience definitely made her a stronger person. She now wants others to know the risks.

“Read up on it, know the symptoms and I suggest looking to see what's inside of your tampon, because the ones that I [was] using, it was all synthetic,” Whitten said. “There was no cotton in it whatsoever. So make sure you know what you're putting in your body, know the risks. And just be safe.”

What Are the Risk Factors?

Dr. Philip Tierno, who specializes in pathobiology and microbiology, said tampons with certain materials can create optimal conditions for the production of TSST-1, the toxin produced by staphylococcus aureus in the vagina. If a woman doesn’t have antibodies to protect against TSST-1, which usually develop with age, it can be a perfect storm for Toxic Shock syndrome to develop.

“Toxic Shock Syndrome is a rare disease, generally speaking, about 3% of women carry the toxigenic strain of staphylococcus aureus that can produce the toxin TSST-1 under the right conditions,” Tierno told InsideEdition.com.

Tierno affirmed that women should pay attention to what materials are in the tampons they are using because of this. He believes cotton tampons are safer, based upon his own research.

“The optimal conditions for TSS are provided by the synthetic components of tampons. The current tampons on the market are made from viscose rayon mixed with cotton or without cotton, it is those tampons that carry a greater risk of toxic production,” Tierno said.

Leaving tampons in too long or using super absorbent tampons can increase the risk of developing TSS.

"Forgotten tampons, [a] forgotten foreign body in your vagina, or even a broken tampon with some strings left in the vagina” can put a woman at risk, Gupta said.

“You may think that you changed the tampon, but there are still some fibers left over in the vagina,” Gupta added. “Depressed immunity or existing infection in the vagina can also increase the risk of TSS.”

Women should not wear tampons to bed and should make sure to change them every few hours.  

“Women in society are very busy right now. It’s very easy to forget a tampon,” Gupta said. “I usually suggest to my patients, if you need to, put a timer on your phone. When you remove your tampon, make sure it’s intact and it’s not broken in pieces. If it is broken, please see your GYN right away.”

Making a Difference

Dawn Massabni now travels to different schools spreading awareness about what Toxic Shock Syndrome exactly is. She hands out information about what TSS is during her visit because she believes if girls and women know the symptoms, they can advocate for themselves and prevent complications.

She is also working on “Madalyn’s Law,” which will be introduced at the state level with the help of New Jersey Sen. Declan O'Scanlon, Assemblywoman Serena DiMaso and Monmouth County Freeholder Sue Kiley. 

The law proposes that information about Toxic Shock Syndrome be taught in all fifth grade to 12th grade health classes in New Jersey, where Dawn currently lives. It also strives to have all tampon companies place TSS warnings on the inside flap of every box.

“Toxic shock is 100% preventable. To have a life lost to something like that is very tragic and emotional,” Dawn said. “We believe with all our hearts that if Maddy made it, she would be doing this herself. She would not stop. Her voice would be heard everywhere and she would make a difference.”

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