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4 year-old Steven Johnson Syndrome Victim Makes a Rare Recovery

Posted: Tuesday, October 22nd, 2013 at 11:28 am

When 4-year-old Emma Miller came down with a fever one Friday evening, her parents gave her ibuprofen, thinking nothing of it.

“We were giving her ibuprofen for the fever to go down, that was a Friday,” her mother told The Daily Iowan. “But Saturday morning, there were red rashes covering her face and then went all over her back.”

Unknown to her parents, little Emma had contracted Steven Johnson Syndrome (SJS), a rare and life-threatening skin disorder characterized by severe rashes and swelling. It’s so unusual that doctors aren’t even sure where it comes from: Some say it’s an autoimmune disorder that reacts badly to infections and medications; others think it’s an existing infection, usually manifesting as flu-like symptoms, that is in turn treated and worsened by medication.

In Emma’s case, doctors rushed to save her life after the condition spread to more than 85 percent of her body. SJS rashes are not dissimilar to second- and third-degree burns, requiring skin grafts and causing potential blindness and hearing loss when it reaches the eyes and ears.

Emma lost most of her skin and spent almost two weeks on a ventilator in the pediatrics ward of the University of Iowa’s Children’s Hospital. Then, on the 11th day, her parents witnessed a miracle.

“Just as fast as she got bad, she flipped the switch and got better,” her father told reporters.

To treat the blisters and prevent further complications, doctors encased Emma in medicated foam for another week. By day 23 she was pronounced fully healed and fit to leave the hospital. Even more miraculously, she escaped almost all the scarring and sensory damage usually left in the wake of SJS.

“She looked perfect,” said Gwen Erkonen, a critical care specialist who helped with Emma’s treatment. “She just looked beautiful when she left. You would never know what she’s been through.”

Emma’s battle wasn’t quite over, her stint in the hospital leaving her muscles weak and slightly atrophies, but she continued physical therapy from the comfort of home and was able to return to school before the end of the year. Today, she’s a bright and energetic 5-year-old who remembers little of her brush with death.

The Miller parents have become advocates for SJS awareness within the community. No word yet if they plan to file a lawsuit against the ibuprofen company.

 

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