The hidden health crisis targeting adolescent girls

Images illustrated by Getty Images, 2; Adobe Stock,1.

The day I almost died began with a crash: our plane fell from the sky. It’s the kind of shock you hear with your gut, not your ears: the plane fell from 10,000 feet. Birds, said the flight attendant, trying to calm us down. Birds flew into our engine and we had to land.

I was on an early flight with about 100 girls, returning from Camp Vega in southern Maine. It was our last day together after eight glorious summers, and we had stayed up for hours replaying the sweetest months of our lives. We had boarded the plane at 8 a.m. and were hunched over our cell phones when the plane plunged half an hour later. Either way, My the telephone rang in the air; It was my mother calling. “Something’s wrong with the engine,” I told him. “We’re being diverted to (Bradley Airport in) Connecticut because we need a longer runway.” My mother, a world-class worrier, did her best not to panic. “Your friends’ moms and I will arrange a van to meet you.”

It wasn’t until we landed that I started to feel bad. Stuck in my seat – we had no gate to park in – my body suddenly started cooking. Nauseated, I begged the flight attendants to let me off. They allowed me and my friend to go out – she was nauseated too – but made us wait at the top of the escalator. We were there for 20 minutes, diving over the side fence. When the shuttle finally arrived and took us to the hangar, I turned pale and passed out in my seat. Luckily, an ambulance was there.

But “luck” is not enough to describe the series of accidents that saved me on the morning of August 11, 2022. If those birds had not hit the plane and diverted us to Connecticut; if there hadn’t been paramedics there in case we crashed; If I had gotten into the van my mother had rented to drive me and six of my girlfriends to Long Island, I probably would have fallen asleep and not woken up. Because that’s what happens to an otherwise healthy girl who ignores the blotchy rash on her leg. Your body temperature rises, your blood pressure drops, and then your heart stops beating. By the time your friends notice you’re dying and not napping, it’s too late to wake you up or get help.

I couldn’t stay awake in the ambulance, passing and losing consciousness. At the hospital – Connecticut Children’s in Hartford – they put me on a stretcher and flushed me with lots of fluids. I started to feel better and had a few saltine crackers; it was the first thing in my stomach since the night before. My parents arrived at the hospital just after noon, after driving three hours from Long Island. Although the nurse told my mother I was ready to be discharged, I was still fading and losing focus. Then, as they spoke, my eyes rolled back; everything goes black with fear. My blood pressure stabilized, cutting off blood flow to my organs and depriving my brain of oxygen for almost a minute.

Nurses and doctors ran to revive me. Emergency chief Dr. James Wiley shouted, “What was wrong with her before she got here?” My mother had no idea – she hadn’t seen me in weeks – so she frantically called my friends in the van. Two of them mentioned the rash on my leg and how it had stopped me from water skiing. Wiley prescribed epinephrine, a stimulant to start the heart, and examined my inner thigh. “She has an infection that’s shutting down her whole body,” he shouted. “Does she have a tampon?” “Yes but why?” said my mother. “She always changes it before she’s supposed to.” “It doesn’t matter,” he said. “We have to remove it. I think it could be toxic shock.

The next five days were a blur for me. I would sleep for 24 hours, wake up and text my girlfriends, then fall into another long blackout. There were multiple IVs in both of my arms, pushing a cocktail of antibiotics through my system. However, only one of them, clindamycin, actually worked – and I was allergic to it. No matter how much lotion I rubbed on my arms, they felt like scratching posts. Worse still, I wasn’t getting better. Three nights later, I was still on epinephrine – and my vitals took a nosedive every time they took me off it. On the fourth night, the infectious disease doctor came by. “We have to try again,” he told my parents. “It’s too dangerous to keep her on.” This time, they weaned me off little by little – and my blood pressure and heart rate remained stable.

By day five, the infection was contained enough that I was able to follow the protocols and go home. I was given a two-week course of clindamycin and told never to use tampons again for fear of reinfection. In fact, even though I did everything correctly for the rest of my lifeI continue had a 40 percent chance of getting sepsis again. As we prepared to leave, my test results came back, confirming menstrual toxic shock syndrome, or mTSS. “That was my first guess, because I’m old enough to remember the ’80s,” Dr. Wiley said, referring to a significant increase in cases of toxic shock among American girls and women. This increase in cases has terrified the public and forced tampon manufacturers to reformulate their products. They reduced the use of chemical additives in their super-absorbent models and displayed warning labels in or on the boxes.

Dr. Wiley told my parents how lucky I was, using the phrase “divine intervention.” If I hadn’t been as young and healthy as I am; if I hadn’t come to a level one trauma center; and if I had gotten in that van with my friends from summer camp, the outcome would have been “much worse,” he said. Organ failure, brain damage, even sudden death: all of this could have happened in a short period of time. He said mTSS was not fully understood – but that I was at maximum risk. Cases are more common in women who menstruate between the ages of 15 and 25. He mentioned tampons as a risk factor if left in too long, meaning more than six to eight hours. I said I faithfully changed mine before the six-hour limit: it was the only thing I learned in seventh-grade health education class. He shrugged and talked about other risk factors: pre-existing infection or immunological weakness. But at that point, I wasn’t really listening anymore. I just wanted to go home.

If snakes had feet, they would probably feel like mine when I got out of the hospital. My soles cracked and blistered until the skin peeled off – then I did it again and again. Same with my palms; they were calloused and chapped, either from the toxins or the antibiotics. Dr. Wiley warned me that my skin was going to molt. Yet I was surprised – and shocked. So shocked, in fact, that I hadn’t told my friends – I couldn’t even explain it to myself. How could a perfectly healthy girl come so close to death? I scoured the internet and read everything I could on the subject of mTSS. But most of the links were 40 years old. Even the recent entries on WebMD were too vague to reassure me.

Since I couldn’t use tampons, my doctor prescribed birth control pills to reduce the frequency of my periods. But then I had to explain to my friends at sleepovers why I was on the pill. I told them I had gotten sepsis, that it had almost killed me, and that the pill had helped me avoid reinfection. But I left out any mention of my vaginal tract; Somehow it felt too personal to share, even with girls I’d known half my life. Because that’s the problem with being 15 and a woman: you’d rather stick a steak knife down your throat than say the words vaginal tract to some friends.

However, I needed answers to the questions I had in my head. I had not received any information from my teachers in college about mTSS. Even if it had been suggested, I would have been too embarrassed to hear it in a room full of boys. My mother, the concerned professional, also had questions. She made us an appointment with an infectious disease expert at a top hospital in Manhattan. This doctor couldn’t tell me why I got mTSS, even though wearing a super absorbent style increased my risk, she said. I asked him if any of them the products were safe for me. She contradicted Dr. Wiley, saying that most of them were fine, provided you didn’t leave them in the last eight hours. I left as disconcerted as when I entered. Was there no one on the ground who could shed light on my plight – and why was this so poorly understood?

Meanwhile, I had a life to live. In the summer of ’23, I toured Europe with friends and met other kids we didn’t know. I ended up telling one of these girls the story of my ordeal and, for the first time, I left nothing out. She was stunned to hear about toxic shock and insisted I tell her friends about it. By the end of the trip, I had talked to a dozen girls about it; it got easier and easier every time I said it. Either these girls had never heard of mTSS or they thought it was ancient history. By the time I got home, I knew I had a duty: tell every girl who would listen about toxic shock.

So I created a website called Teachschoolsshock.com around an essay I had written about my illness, and filled it with links to other personal accounts of toxic shock. One of these links was to a site called dontshockme.org. It was created by Dawn Massabni, a New Jersey mother who lost her teenage daughter Madalyn to mTSS in 2017.

“Maddy was coming home from college for her birthday,” says Massabni, “and came down with what I thought was a stomach illness.” Massabni sent her daughter to bed and Maddy seemed to pull herself together the next day. But…