Dawn and Maddy Massabni

After Losing her Daughter to Toxic Shock Syndrome, A Mother Becomes an Advocate to Create Awareness

My daughter Madalyn “Maddy” was adventurous and full of life. Her laugh was infectious and when she walked into a room, everyone knew Maddy had arrived.  Born and raised on the Jersey shore, her favorite thing was to go to the beach, all year round.  She loved her friends, swimming, snowboarding, and cheerleading. Her older brother, Georgie, was her best friend. A free spirit who never judged people, she told everyone they were perfect just the way they were. With a father who was no longer in the picture, our little family of three was perfect and it was everything to me. My world changed when my beautiful Maddy died of Toxic Shock Syndrome, three days after her 19th birthday, in 2017.

Maddy was a Freshman at Lynn University in Boca Raton, Florida while Georgie was at the University of Tampa.  We have a family tradition of celebrating holidays and birthdays together, so Maddy split her celebration and spent time with Georgie then came home to Rumson, New Jersey a few days before her birthday on March 27th to celebrate with me.  We went out to dinner, but she wasn’t feeling well and didn’t eat much.  A little later she was sick to her stomach and went to bed.  By the next morning, she had a fever.  Her symptoms resembled a stomach bug, so I told her to rest and if she wasn’t better by the next day, we would immediately go to the doctor.  The next morning, I couldn’t wake her.  When I finally did manage to wake her, she could barely walk, and I knew something was very wrong. I called the First Aid, but by the time they arrived, Maddy passed away in my arms.  She was revived several times and was put on a ventilator only to be taken off the next day.  It was the hardest decision I have ever had to make.

I was in complete shock; my beautiful, vibrant, healthy daughter was gone.  How could this be? It was incomprehensible.

My shock turned to anger which turned to outrage when it was confirmed Maddy passed away from Toxic Shock Syndrome (TSS).  Maddy had her period at the time and was using Playtex Sports Tampons.  There is a correlation to super absorbency tampons and TSS. The fallacy is that a tampon must be left inserted for many, many hours for bacteria to breed and cause toxic shock.  In reality, it can take as little as two hours for toxic shock to develop. In fact, 90% of TSS cases go unreported because, like Maddy’s case, the symptoms mimic other illnesses so TSS is misdiagnosed. Caught early, TSS can be treated with antibiotics.  Untreated, some women will develop organ damage, loss of limbs, suffer lifelong illnesses and in some cases, like Maddy, die.  While there is no one test for TSS, women can provide blood and urine samples that can be tested for infection.  Awareness of the risk factors and symptoms is critical to enable women to be more pro-active about testing and treatment.  I know all of this now, but I knew none of it then.

I’m not sure how I made it through that first year, I didn’t have the will or the energy to leave the house.  Eventually, Georgie and I decided we needed to do something to honor Maddy so her memory would live on and she would not be forgotten.  We also knew it would have to be something Maddy herself would have been passionate about.  The more I thought about this, the more I kept coming back to the senselessness of it all, how if I had only known it wasn’t a stomach bug but TSS instead, perhaps everything would have been different.  It became apparent to me, that I had to become an advocate for TSS awareness.  It matters to me, and to my son, that other families are spared the heartbreak of what we went through, and that the health and lives of women are protected.

Maddy and Dawn MassabniThe co-founder of my bereavement group introduced me to Congressman Chris Smith.  My anger fueled me as I spoke with Congressman Smith and others in his office. I spoke about how my beautiful, healthy daughter died of TSS and no one was holding the tampon manufacturers accountable– it was all being swept under the rug. TSS is much more prevalent than is being represented, yet no alarm is being raised.  Congressman Smith was very receptive, and he and I have met with officials to discuss how to raise public awareness and advance the push for warning labels.  I’ve also been asked to review and comment on the related FDA regulations for manufacturers and will meet again with the FDA on this in the future. Long term, the goal is to pass a congressional bill, and in preparation for that, I was asked to provide input on what should be included in the bill.  All of this is at the federal level.  It’s a long process but I take it on willingly if it means it will spare others the pain my family and I have been through.

At the state level, our efforts have resulted in the introduction of a bill called Maddy’s Law (Bill 5670).  Maddy’s Law would require the Commissioner of Health to establish a TSS public awareness campaign, include mandatory TSS education in all health classes in Grades 5 and above, and have TSS warning posters placed in public restrooms.  We are also working with the County Health Department to create TSS programs, TSS Awareness Month and Day.  Hopefully, it will be March and March 27th respectively, Maddy’s birthdate.  The goal is to create the program here in Monmouth County and then take it statewide. My passion lies in speaking to groups and telling Maddy’s story.  I’ve spoken in high schools, universities and at large foundation gatherings. People are reaching out to us, telling us we have saved the health and lives of their loved ones. Others tell us about the long-lasting health problems their children have suffered.

Maddy and Georgie MassabniOften, Georgie accompanies me on speaking engagements as well. While some may consider it odd at first that a young man is speaking about what is often considered a taboo subject, he is passionate about what he is doing and believes men should be just as knowledgeable about TSS as women.  He talks about it all the time and hands out cards with follow up information.  We are both committed to honoring Maddy’s memory and sparing others the awful pain we’ve endured from her loss.  Recently, Georgie and I spoke to a group of 30 young women at his school.  I asked the group how many of them had heard of TSS; three raised their hands.  When I asked how many threw away the tampon product insert without reading it, every hand went up and I started to cry.  Georgie looked at me and said, that’s why we’re here.

In truth, even if those young women had read the package insert, it would have been difficult to find any important messaging or warning in the fine print.  We want to make it imperative that the makers of female hygiene products take on the responsibility to include explicit warnings, related to tampon use and the chemical composition of the products. This should be on the outside of the product package in bold print so a woman can make a wise decision to use or not.  On the inside product package flap, the signs and symptoms should be listed in bold print to help women recognize TSS symptoms and seek medical help immediately, and not dismiss symptoms as a harmless stomach bug.

And it’s not just tampons. Anything a woman inserts into her body—such as a menstrual cup– has the potential to accumulate and grow bacteria and could also cause TSS.

We’ve had a great response to all our efforts but there are still challenges.    The most disheartening is when people say, “Toxic Shock? Is that still around?” Unfortunately, I know all too well that it most definitely is still around, it just isn’t talked about, diagnosed or treated properly.  The other challenge is getting into places to speak—especially schools.  TSS is taught in some health classes but not in great depth.

The most rewarding and fulfilling aspect of what we do now is honoring Maddy and her life.  Creating awareness, changing policy to protect women, informing women so they can self-advocate their own health issues.  Our goal is to make sure no one else loses her health or life because of a hygiene product. We want to ensure that no one else experiences our tragedy and pain.  It is 100% preventable.

I still cry every single day. I would do anything to go back and change what happened. Some days are rotten, and some are better. I know it will hurt forever but I deal with each day as best as I can.

But I have also learned a lot in these past two years. I have learned that we are stronger than we think, we can do anything if we are determined, and that it is wonderful to give back and make a difference.  You must have a purpose, and Georgie now is my purpose. Our mutual purpose is that we want to save lives and make a positive difference.

Together, Georgie and I have founded the non-profit organization, Maddy Massabni’s Foundation for Toxic Shock Awareness, to formalize our efforts to raise awareness of TSS.  The vision for our Foundation is to reach as many people as possible: to educate and create awareness of TSS, create effective policies related to women’s health, change FDA Regulations for manufacturers, hold companies accountable and to a higher standard to save more lives.

Anyone interested in finding out more about or donating to our efforts can visit our website Don’t Shock Me.org  for more information.

Instagram: https://www.instagram.com/dontshockme/

Facebook: https://www.facebook.com/Dont-Shock-Me-19-Maddy-Massabni-Foundation-for-Toxic-Shock-Awareness-239489183429844/

 

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