Rylie Whitten’s life seemed to change in a heartbeat.
One moment, she’s an upbeat 15-year-old girl, eager to return to school after winter break.
The next, she’s a patient lying in a hospital bed, on the highest level of life support, as she battles toxic shock syndrome.
The dramatic transformation has left her parents reeling. But not hopeless.
They count on Rylie to emerge triumphant from this life-and-death struggle, buoyed by intensive medical care, prayer and a powerful support network in their hometown of Greenville, Michigan.
Toxic shock syndrome
To minimize the risk of toxic shock syndrome, Daliya Khuon, MD, a pediatric infectious disease specialist, offers several suggestions:
- Wash your hands before using a tampon.
- Use a tampon with the lowest absorbency for your needs. Stay away from high-absorbency tampons unless you have a very heavy flow.
- Keep a tampon in place for just a few hours. Change them frequently.
“We are not leaving here without her,” said her dad, Nathan Whitten.
He spoke about Rylie’s medical battle recently at Spectrum Health Helen DeVos Children’s Hospital in hopes of raising awareness about toxic shock syndrome, a life-threatening illness set in motion by a bacterial infection.
“I don’t wish this on anyone,” he said.
The condition is rare—it affects one in 100,000 U.S. women of child-bearing age. And it can quickly become life-threatening, as it did with Rylie.
“She is definitely the sickest toxic shock syndrome patient I have ever taken care of,” said Surender Rajasekaran, MD, a pediatric intensive care physician.
It started like the flu
Rylie’s symptoms began with body aches Sunday, Jan. 3, the night before school resumed.
She took a hot bath in hopes of feeling better by the next day. An active student-athlete, she looked forward to her return to school.
But she stayed home Monday and Tuesday as the flu-like body aches continued and she had some “minor vomiting,” her dad said. He and his wife, Jill, checked in with their family doctor.
Rylie had no cough or high fever, but by Tuesday evening, she clearly was in pain.
“She was lying in bed and all of a sudden, she’d moan,” Nathan said.
The Whittens brought Rylie to the emergency department at Spectrum Health United Hospital in Greenville. Tests ruled out influenza and spinal meningitis. But they also showed a serious infection underway.
“Within 10 to 15 minutes of blood work coming back, we were told Aero Med was dispatched and she would be coming down here to (Helen DeVos Children’s Hospital in Grand Rapids),” Nathan said.
Rylie was her usual, upbeat self even as she prepared for the Aero Med flight.
She went from being a normal kid with just flu symptoms—talking, coherent, everything is absolutely fine—to boom! Body shutting down—we need severe life support now.
“She was excited. It was ‘Hey, I get to ride in a helicopter,’” said her dad, Nathan Whitten. “That’s just who she is.”
After the parents made the 30-mile drive to the hospital, they learned Rylie might have toxic shock syndrome.
Within seven hours, they were told she needed an intensive form of life support—extracorporeal membrane oxygenation—known as ECMO. It involves a machine that pumps blood and oxygenates it, doing the work of the lungs and heart.
“When someone’s on that, you basically are going hour by hour,” Dr. Rajasekaran said. “You are not completely sure someone is going to survive the next few hours.”
Rylie remained on ECMO for eight days.
Her parents struggled to grasp the dramatic change.
“She went from being a normal kid with just flu symptoms—talking, coherent, everything is absolutely fine—to boom! Body shutting down—we need severe life support now,” Nathan said.
A rash like a sunburn
Doctors traced the cause of Rylie’s toxic shock syndrome to a toxin-producing bacteria—staphylococcus aureus, said Daliya Khuon, MD, a pediatric infectious disease specialist.
The condition usually resembles the flu at first, as it did with Rylie. It also can involve a sunburn-like rash—which Rylie also had by the time she arrived at Helen DeVos Children’s Hospital.
Toxic shock syndrome sparked headlines in the 1980s because of a spike in cases linked to high-absorbency tampons later pulled from the market, according to the Centers for Disease Control and Prevention. Since rates dropped, about the only mention of it is found in package labels and inserts that warn consumers about the risk of toxic shock syndrome.
Rylie’s case was the first reported in Montcalm County since 1992, said Andrea Tabor, community health and education director of the Mid-Michigan District Health Department.
The syndrome can occur at any age, but younger women appear to be more at risk, Dr. Khuon said.
“People are exposed all the time to the staph that produce this toxin,” she said. “Nearly 100 percent of adults have antibodies to the toxin itself.”
During a woman’s menstrual cycle, and particularly with tampon use, the bacteria can overgrow. They produce toxins, which can get into the bloodstream and travel to different organs. A “superantigen,” the toxin triggers a strong inflammatory immune response—which also can be damaging.
Doctors must treat both the infection and the body’s inflammatory response.
“You have the cardiovascular system failing. You have the lungs failing—filling up with fluid,” Dr. Raja said. “What we did was support those parts of the body that were shutting down, kind of giving those parts a rest and time to recover.”
Rylie’s youth and fitness helped her in the battle, Dr. Raja said. She is a cheerleader, a member of the dance team and a soccer player.
“She’s very, very athletic,” Nathan said. “She’s young. She’s healthy. She’s never had any medical problems other than the common cold.”
‘She won’t give up’
Her parents have remained by her side. On the door of her room hangs a photo of Rylie, a vibrant young woman with a beautiful smile.
The Whittens and their 18-year-old son, Kyle, a high school senior, have been touched by the support from Greenville.
Throughout the community, signs announce prayers for Rylie. There has been a candlelight vigil, prayer chains and moments of silence at the high school. At a recent basketball game, the audience chanted Rylie’s name and the dance team dedicated a dance to her.
“That is so awesome, so overwhelmingly awesome,” Nathan said. “I can’t emphasize how much we feel that … and it’s helping us through.”
On a Prayers for Rylie Facebook page, medical updates are mixed with messages of support and love. The Whittens are touched to hear many stories of kindness shown by their tender-hearted daughter.
“If someone is having a bad day, she is the one who is going to stand with them in line. She’s the kid who’s going to smile at them,” Nathan said. “Very uplifting. Very upbeat.”
Two weeks after she went to the ER, Rylie’s dad said she’s off the ventilator, although she still deals with pneumonia and other issues as she’s weaned from various medications.
“But all things considered, she is doing great,” he said.
A talented musician, Rylie plays violin and guitar and dreams of going to Michigan State University to study music—and to be a MSU cheerleader. Her parents have faith that Rylie will move ahead with her dreams, although much recovery and rehabilitation will come first.
“We know it’s going to be a long, bumpy road,” Nathan said. “She won’t give up. We know that. She’s very strong-willed.”