Halie’s story

Halie recently treated Shriners Hospital for Children – Cincinnati to an impromptu concert in the hospital lobby before heading home to Virginia with her family. Halie, who at 15 plays banjo and guitar, sang and played for staff and visitors waiting for an appointment. On this day, only remnants remain of the severe blisters and rash that covered her body just two weeks prior. Her mother Hollie feels divine guidance put them on the rapid path from an urgent care clinic in Norton, Virginia to Cincinnati Shriners Hospital.

One Tuesday in early May, Halie came home from her JV baseball game and removed the glare-shielding “Eye Black” from her cheeks, where she noticed a slight rash. The next day, it was still there; friends commented that it looked like she had been crying. By Friday, she developed a sore throat and her eyes were beginning to swell. Saturday morning, blisters developed on Halie’s lips and rash had spread down her arms and hands. Her mother took her to the local urgent care where they tested for strep throat. Though the results were negative, they gave Halie antibiotics and steroids and sent her home.

With no improvement, they went to the local hospital which transferred Halie to a children’s hospital in Johnson City, over an hour away. “As a mom and nurse, I thought this shouldn’t progress,” said Hollie, “but after three doses of antibiotic the rash was getting worse.” At Niswonger, they began photographing progression to share with colleagues. Luckily, one of those colleagues was Dr. Phillip Chang of Cincinnati Shriners Hospital. Dr. Chang suggested Stevens-Johnson Syndrome, a rare, serious disorder of skin and mucous membranes. If untreated, it can become TEN, toxic epidermal necrolysis. “The doctor [at Niswonger] was very concerned by how quickly Halie’s skin was coming off,” said Dr. Chang. “He knew Cincinnati Shriners Hospital had been treating SJS for years, and contacted us.” Monday morning, they were on the way to Cincinnati.

“This medication-triggered syndrome is very rare, but we have seen an increase in the past three years,” Dr. Chang stated. “Cincinnati Shriners has had six cases this year, more than the past two combined.”

Nutrition is a key component in treating SJS, and Cincinnati Shriners Hospital is a research leader in the field. By the time she arrived, Halie’s blistering had spread into her nose, mouth, and throat, making it painful to eat. But when mention of a feeding tube came up, she managed to drink the specially-prepared “core shakes”—first three, then four a day. “I had blisters on the inside of my nose,” said Halie. “But when they said that’s where the feeding tube goes, I drank the shakes!” Within a few days and the expert care of Cincinnati Shriners Hospital staff, her once-weeping blisters were healing and inflamed rashes subsiding.

Now, as she waited for the final check-up before driving home, Halie shared a beautiful bluegrass ballad, a grateful performance for Shriners healing care.

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