A Fighting Spirit: Kelsey’s Story

Thanks to expert care, Kelsey survived toxic shock syndrome.

By Erica Gadbois

On a Sunday in late 2018, Kelsey Johnson, then 17, woke up with flu-like symptoms and a fever. She called in sick to work and settled in for a day of recovery at home. On Tuesday, she developed an unusual rash. By Thursday, she was intubated and heavily sedated at Rady Children’s Hospital-San Diego with a 5 percent chance of survival. Toxic shock syndrome caused by the bacteria Staphylococcus aureus was plaguing her body.

Kelsey’s mother, Kari Johnson, says Kelsey’s harrowing experience began looking like any typical cold or flu. But when her daughter woke up a few days after her symptoms began feeling lethargic and sicker than she had, she immediately took her to urgent care near their Temecula home, from which she was promptly sent to the nearby emergency room. Her timing couldn’t have been more spot-on. “She was able to walk into urgent care, but she wasn’t able to walk out on her own,” Kari recounts. “When we got to the emergency room, she wasn’t able to walk at all. This was all within the span of two hours.”

At the emergency room, Kelsey was evaluated and had astonishingly low blood pressure — just 60/23. Unsure of what exactly was causing her slew of concerning symptoms, physicians knew Kelsey needed to be admitted. However, because they didn’t take inpatient pediatric patients, she would have to be transported to Rady Children’s. The Temecula hospital coordinated with the Children’s Hospital Emergency Transport (CHET) team to have Kelsey picked up and rushed to San Diego by ambulance. The uncertainty of her condition and prospect of a hospital stay had Kelsey feeling frantic, but she and Kari both say the CHET team expertly worked to reduce her anxiety. “The helped take her from having a panic attack to feeling calm,” explains Kari. While they note all members of their transport unit were exceptional, Jeffrey Brian Fisch, A.L.S., R.T., C-N.P.T., stands out the most for his especially calming presence. “He was amazing for us in that moment,” Kari notes.

The ambulance arrived around 10 p.m. on Wednesday, and Kelsey was admitted to the pediatric intensive care unit (PICU) with two 24-hour care nurses. From this point and for several weeks forward, Kelsey doesn’t remember much, but Kari will never forget. “They told us [Kelsey’s father, Greg, and her two sisters, Kasey and Lindsey] how critical she was, and she kept losing consciousness and couldn’t breathe. I remember being sick to my stomach and them telling us that it didn’t look good.” On Thursday, Kelsey’s care team made the decision that she needed to be intubated — given a tracheal tube to support breathing — and placed under constant sedation to allow Kelsey to tolerate the breathing machine and give her body a chance to rest and recover. Susan Duthie, M.D., a critical care physician in the PICU, was watching over Kelsey’s care.

“Kelsey’s body was under a tremendous amount of stress,” says Dr. Duthie, “so much so that her heart and lungs were functioning at extremely low levels. Our number-one focus was bringing her back to a level at which she could regain strength and put up the best possible fight against what was attacking her.” Dr. Duthie lent additional support through a furry, four-legged friend — her golden retriever, Tank, with whom she volunteers in the Hospital’s Canine Therapy Program, PetSmart Paws for Hope at Rady Children’s Hospital-San Diego. The Johnsons are dog lovers and had a golden retriever of their own, and Kari says Tank provided much-needed comfort to her family.

Simultaneously, John Bradley, M.D., director of the Division of Infectious Diseases at Rady Children’s and a professor and chief for the Division of Infectious Diseases within the Department of Pediatrics at University of California San Diego School of Medicine, was working against the clock to determine what was making Kelsey so ill. Test results soon proved his suspicion of toxic shock syndrome accurate, and Kelsey’s care team leapt into action with critical therapies, including intravenous antibiotics. Kari explains that from that juncture, Kelsey had as many as 14 different IVs at once. “We’re so lucky to have ended up at Rady Children’s and with Dr. Bradley,” Kari expresses. “He knew exactly what needed to happen.”

“There are many different causes of shock in teenagers, but toxic shock is a unique bacterial infection that requires the use of antibiotics to stop the production of the deadly toxic shock toxin, treatment to neutralize the toxin, as well as antibiotics to kill the bacteria and prevent the infection from coming back,” explains Dr. Bradley. “Our team was using all these measures from the beginning, but once we had the culture results to confirm toxic shock syndrome a few days after she was in our intensive care unit, we knew that we were in for long recovery, that we needed to expect damage to many tissues and that she easily could have died before she arrived at Rady Children’s.”

Dr. Bradley states that toxic shock syndrome has become much less common than it was in years past, making Kelsey’s case a bit of an anomaly. In fact, he says Rady Children’s hadn’t seen an incidence in more than a decade. Accordingly, he wanted to catalog the case with the Centers for Disease Control and Prevention (CDC) should any potential resurgence occur. Collaborating with Rady Children’s colleagues including Erica Sanford, M.D., a fellow in the PICU, and Michelle Vanderpool, supervisor of Laboratory Services/Pathology, as well as partners at the County of San Diego’s Public Health Services, Dr. Bradley sent a sample to the CDC for analysis. The organization confirmed and filed the toxic shock diagnosis. “I don’t think all of us fully grasped the magnitude of that until recently,” marvels Kari.

Even with a diagnosis, Kelsey’s fight was far from over. She received a blood transfusion to ensure her tissues maintained sufficient oxygen levels. Her heart rate would hit alarming highs and lows, once going up to 270 beats per minute (for perspective, a normal rate for someone Kelsey’s age is between about 60 and 100 beats per minute). And, “it was probably day four or five when her toes started turning black,” says Kari.

“When the heart cannot pump blood with oxygen to tissues, they die,” explains Dr. Bradley. “The toes and fingers are usually the first to go. If the body is trying to generate fever, it [also] takes blood flow away from your extremities that lose heat, which can make blood flow to the fingers and toes even worse.”

“To me, there were two nurses in particular that stand out in that moment, Richard and Sarah. I remember Richard at one point leaving her room and saying, ‘I’ll be right back.’” Richard had gone to the neonatal intensive care unit to get a few of the heaters used to keep tiny babies warm, and he and Sarah wrapped Kelsey’s feet with towels and the heaters to reduce inflammation and damage. “This was a huge moment in the care we were getting. They took the extra steps to take care of her. I was amazed they even thought to do that and took the time,” Kari continues. As a result, Kelsey’s toes were saved from a potential amputation.

During her weeks-long stay, Kelsey notes that either Kari or Greg, or both, were always by her side. Her sisters were also there as much as they could be, and they had a unique and touching way to connect with Kelsey even when she couldn’t respond. Kari says the girls would sit with Kelsey and play music, especially her favorite bands, Maroon 5 and Coldplay. To her amazement, Kelsey’s vital stats would visibly improve in conjunction with her most beloved tunes.

When Kelsey started to turn the corner after what Kari calls “a teeter-totter ride,” her strong bond with her family supported her recovery in another remarkable way. Awake but continuing with intubation, Kelsey couldn’t speak and express herself. But her sister Kasey had a solution. Both girls are proficient in American Sign Language, and Kasey used it to converse with Kelsey and pass along her thoughts to the Johnsons. “Dr. Bradley told us that was the first time someone intubated was able to communicate like that,” remarks Kari. He even ensured Kasey was recognized as Kelsey’s legal interpreter so she could still visit during the Hospital’s flu restriction season.

Soon after, Kelsey moved from the PICU into general inpatient care. Working back to her usual driven self, she quickly took charge of her recovery, earning her a release four weeks ahead of what was anticipated. “That’s because of her determination and fighting heart,” Kari says, giving her daughter’s devotion to physical therapy as an example. “Even after PT, she would lie in bed and do her own.”

Kari comments that Kelsey’s care team was also always in her corner, working right along with her to get her healthy and home. “They were all just amazing,” she emphasizes. “We cannot say ‘thank you’ and appreciate the staff enough. I truly feel they saved her life.” She even provides a few more specific shout-outs to Raveen Raviedran, M.D., one of the critical care physicians in charge of Kelsey’s sedation and medications — “When I explained to him that she’s a go-getter, he was on my side, pushing her, working to get her awake sooner” — and PICU nurse Mary Jo Pleisch, who brought Kelsey her favorite candy, Junior Mints, when she made an offhand mention of them — “It was little things like that that kept her spirits up and motivated her. ”

On New Year’s Eve, able to take just a few steps on her own, Kelsey went home. True to form, she is going to the gym almost every day and continuing her physical therapy, and has regained her ability to walk. At 60 percent function, her heart is still healing, as are her eyes — between the toxic shock syndrome itself and her myriad medications and devices, she experienced some temporary effects on her vision. But she’s strong, she’s bright and she’s laser-focused on her future. As she continues to recover, Kelsey will finish her senior year through home school, but she’s maintaining her top-notch grades and aims to walk in her graduation ceremony with the rest of her class this June. From there, she hopes to attend San Diego State University and major in sociology. “This experience opened my eyes to more jobs that are available [in that field],” she explains. “Maybe I’ll do something within the hospital.” Don’t call it an official job offer, but we’re pretty sure Rady Children’s would be glad to have her back — just as a member of the team this time around.

Published March 2019

My 19-year-old daughter died from Toxic Shock Syndrome. Here’s my plea to lawmakers.

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Dawn Massabni

Mom shares plea after 19-year-old dies from toxic shock syndrome

By Nicole Pelletiere

Video by Elissa Nunez

It was late March in 2017 when Madalyn Massabni flew home from college to spend her 19th birthday with her mother.

Dawn Massabni, a mom of two from Rumson, New Jersey, said she was looking forward to celebrating with Maddy, whose smile could light up a room.

At the time, Maddy was studying fashion at Lynn University in Florida and had dreams of working backstage at runway shows.

Dawn Massabni

Madalyn Massabni, 19, is seen with her mother, Dawn , in an undated photo.

“She dressed how she wanted and didn’t fear judgement. She did a little modeling and she loved it,” Massabni told “Good Morning America.” “She was on the cover of a magazine. 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.'”

‘I miss hearing, “I love you, Mommy”‘

On March 27, Maddy’s birthday, she and her mother went out to dinner. Massabni said Maddy wasn’t feeling well when the two got home. Maddy got sick, but rested in hopes she’d improve.

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(MORE: My son died from positional asphyxia in a car seat. Here’s what parents need to know.)

“I said, ‘We’ll go to the doctor first thing in the morning,’ Massabni recalled. “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.”

Massabni said first responders arrived to her home, but at that point, Maddy had experienced a seizure.

Dawn Massabni

It was late March in 2017 when Madalyn Massabni flew home from college to spend her 19th birthday with her mother, Dawn. Maddy would die days later from Toxic Shock Syndrome.

“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.”

Maddy was brought to the hospital, and doctors tried to revive her. The following day, the teen’s health took a turn for the worst. Her family made the decision to take off ventilators, and she died March 30, three days after her 19th birthday.

Dawn Massabni

It was late March in 2017 when Madalyn Massabni flew home from college to spend her 19th birthday with her mother, Dawn. Maddy would die days later from Toxic Shock Syndrome.

A tearful Massabni said life hasn’t been the same for her and her son, Georgie, since losing Maddy.

“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.'”

Dawn Massabni

Madalyn Massabni, 19, is seen with her mother, Dawn and brother Georgie, after she graduated high school

“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.'”

Maddy had her period over the course of her sudden illness and was using tampons. Her official cause of death was Toxic Shock Syndrome, Massabni said.

(MORE: I’m a cautious mom who had a hot car scare. Here’s my plea to parents and lawmakers.)

(MORE: This Congresswoman nicknamed ‘period lady’ is on a mission to give all women access to period products)

What is Toxic Shock Syndrome?

Toxic Shock Syndrome is a rare but serious illness caused by some types of staphylococcus bacteria. Not all TSS cases are linked to tampons, but women who use them are at greater risk. Women who are not menstruating, men and children also may contract TSS due to infections associated with skin or surgical wounds, according to the
National Organization for Rare Disorders.

The American College of Obstetricians and Gynecologists told “GMA” that leaving a tampon in your vagina for too long is a risk factor linked to TSS. In some cases, TSS can result in the amputations of fingers or toes or limbs, or even death.

Dawn Massabni

It was late March in 2017 when Madalyn Massabni flew home from college to spend her 19th birthday with her mother, Dawn. Maddy would die days later from Toxic Shock Syndrome.

According to the the National Center for Biotechnology Information, cases of menstrual and non-menstrual TSS are estimated to be around 0.8 to 3.4 per 100,000 people in the United States. If left untreated, it can be fatal.

“While the mortality rates have decreased over the past two decades, they still vary from 1.8 [to] 12%,” the NCBI
states on its website. “For those patients who are misdiagnosed or the treatment is delayed, the mortality can exceed 50%. For this reason, healthcare workers should be aware of the disorder and even if they do not manage it, should be able to make a prompt referral. “

The ACOG recommends that women should change tampons every four to eight hours.

Dawn Massabni

It was late March in 2017 when Madalyn Massabni flew home from college to spend her 19th birthday with her mother, Dawn. Maddy would die days later from Toxic Shock Syndrome.

Dr. Jacques Moritz, medical director of Tia Women’s Health Clinic in New York, told “GMA” that it’s also important for women to learn early signs and symptoms of TSS to recognize it as soon as possible.

“The culprit seems to be these super absorbent tampons and it seems to be time-related, meaning the longer it’s in, the more of a chance it happens,” said Moritz, adding that there aren’t enough reliable studies on TSS in association with tampons. “Bacteria causes it. [If] super absorbent ones are going to stay in longer, the longer you can forget that it is in. And if you don’t have leak-throughs, women could forget.”

Dawn Massabni

Madalyn Massabni, 19, is seen with her mother, Dawn and brother Georgie, in a childhood photo.

Here are potential symptoms of TSS, according to Moritz and to the ACOG:

• Low blood pressure
• Fever
• A rash on the palms, soles or any place on the body that looks like a sunburn
• Body aches
• Vomiting
• Diarrhea
• Confusion

‘It’s a horrible death that can be prevented’

Since Maddy’s death, Massabni has made it her mission to educate women and girls on TSS and safe tampon use by speaking at schools and universities.

Her 501C3 foundation,
Don’t Shock Me, was created in honor of Maddy to spread awareness on the infection.

On Nov. 14, Massabni had a meeting with the Food and Drug Administration, to discuss potentially new regulations for tampon manufacturers.

Dawn Massabni

Madalyn Massabni, 19, is seen with her mother, Dawn and brother Georgie, in an undated photo.

Currently, the
FDA’s code of federal regulations on user labeling for menstrual tampons
states that if TSS risks, warning signs and information on when to seek medical attention is “included in the package insert,” then the following alert should appear legibly on the package label:

“Attention: Tampons are associated with Toxic Shock Syndrome. TSS is a rare but serious disease that may cause death. Read and save the enclosed information.”

Dawn Massabni

It was late March in 2017 when Madalyn Massabni flew home from college to spend her 19th birthday with her mother, Dawn. Maddy would die days later from Toxic Shock Syndrome.

Dawn Massabni

Madalyn Massabni, 19, is seen with her mother, Dawn and brother Georgie, in an undated photo.

Massabni’s asking the FDA to include a bigger, bolder warning on every box, along with signs and symptoms of TSS on the inside flap — not just on the paper insert, which girls probably are tossing in the trash, she said.

“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.”

While there are no specific guidelines, Moritz agrees the following could help prevent TSS while using tampons:

1. Use tampons with lower absorbency
2. When your flow is heavier, change your tampon more often
3. Alternate with menstral pads
4. Never be ashamed to go to your doctor, emergency room or urgent care center if you’re experiencing symptoms, or forgot to remove your tampon, Moritz said.

Dawn Massabni

Madalyn Massabni, 19, is seen with her mother, Dawn , in an undated photo.

Massabni is also fighting to have “Maddy’s Law” passed in her county, which would mandate students in fifth grade, and higher grades, have information sessions on TSS. She’s asking for anyone who’s experienced TSS to reach out on
dontshockme.org or via email at [email protected].

Dawn Massabni

Seen in an undated photo is Madalyn Massabni, 19.

“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.”

What is Toxic Shock Syndrome that caused model Lauren Wasser to have her legs amputated?

Covers of glossy magazines have ceased to broadcast the “unattainable ideal of beauty”, shifting the focus to body positivity and body neutrality. Filming that shows skin texture, stretch marks on the body and even cellulite does not seem unusual to us anymore, but the new cover of the French Elle with the “girl with golden legs”, Lauren Wasser, amazed many. Her story took off in 2012 when the model lost her legs early in her career due to toxic shock syndrome while using tampons. What you need to know about this syndrome and what symptoms should you see a doctor for?

Cover of Elle France

There is no need to panic and give up tampons. According to statistics, toxic shock syndrome develops in about 3 out of 100 thousand women (which is 0.003%) who use tampons during menstruation. It is also noted in women who do not use tampons and who have an infection after childbirth, abortion or surgery.

Toxic shock syndrome , or TSS , is a rare but very dangerous syndrome. This is an intoxication of the body as a result of an acute bacterial infection caused by staphylococci and streptococci. These bacteria can be in the body in small quantities, without affecting vital functions. But when there are factors that contribute to the reproduction of these bacteria, their number skyrockets, and toxic waste products become deadly. About half of the cases of TSS develop in women during menstruation.

Lauren Wasser (Photo: Social Media)

Early signs of TSS can appear up to 48 hours after a tampon is inserted or removed, and late signs can take up to 20 days. Most often, it develops if a woman uses a highly absorbent tampon and does not replace it with a new one on time (after 6-8 hours). Typical signs of the syndrome include:

– fever up to ^{39 degrees;}

– drop in blood pressure;

– rashes on the body;

– increased soreness of the skin;

– aches and pains in muscles and joints;

– weakness;

– drowsiness;

– nausea and vomiting.

Symptoms rarely appear together, so always monitor your well-being and, if you notice a deterioration, call a doctor.

Lauren Wasser (Photo: social media)

Why did Lauren Wasser have her legs amputated? As a result of the infection, the girl developed gangrene of the lower extremities. The only possible salvation was the amputation of the right leg and the removal of the toes and heel on the left leg. However, six years later, she had to amputate her other leg as well – the gangrene had spread too far.

“I spent several months in the hospital and almost a year in a wheelchair. It was easy to give up, but I was determined to get on with my life.”

Having survived all the hardships, she continued her modeling career and actively urges tampon manufacturers to stop using dioxin, synthetic fibers, chemical fragrances and other harmful ingredients. And in the modeling world, she is now called the “girl with golden legs.”

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How does model Lauren Wasser live after she lost her legs due to toxic shock from using tampons

Meet Lauren Wasser. The girl lost both legs due to toxic shock syndrome during the improper use of tampons. We tell how it happened and how she lives now.

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Lauren Wasser became famous throughout the world, alas, because of the tragic events. Once upon a time, the girl lived an ordinary life: she worked as a model, played basketball and rode a bicycle. And at 24, she had to learn to live again.

In October 2012, Lauren began her period, which seemed to be nothing out of the ordinary. simple physiology. Vasser used tampons, changing them in the morning, afternoon and evening. Having gone to a friend’s birthday party, the girl felt unwell, as if she had the flu. Her only desire was to go to bed as soon as possible, so after having fun for a while, Lauren hurried home, quickly undressed and got into bed.

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Vasser was awakened by knocking on the door and shouting: “Police!” It turned out that the mother of the girl, who could not contact her for a long time, raised a panic. Then Lauren assured the cops that she was fine and she just wanted to sleep. Having contacted her mother, the girl again went to bed.

In the morning, the police came to her again, as well as Lauren’s friend, but this time no one opened the door for them. Having broken the door, law enforcement officers found Vasser lying face down on the floor. She was barely breathing. She was immediately taken to the hospital: Lauren was on the verge of death – her organs were failing, she suffered a heart attack, and the doctors could not stabilize her condition for a long time, because they did not understand what was the reason.

Clarity was made by an employee of the infectious department. He asked, “Does she have a tampon inside?” And so it turned out that Lauren had toxic shock syndrome: one of the tampons she used turned out to be infected with staphylococcus aureus. This is the rarest case: it occurs 1 time per 100 thousand people.

The forecasts were unfavorable, and yet the girl was saved. Lauren’s legs were stricken with gangrene – it required amputation of the right leg and removal of the toes and heel on the left leg. This was her only salvation, and she agreed to become an invalid. Alas, a few years later I had to remove the second leg as well – gangrene left no chance.

“First I was told that I had no chance of surviving, and then that I would never walk. I spent several months in the hospital and almost a year in a wheelchair. It was easy to give up, but I was determined to continue living, ”Lauren admitted years later.

Vasser kept her promise and continued to live life to the fullest.