Kid Captain: Emma Miller

Sept. 27, 2013

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IOWA CITY, Iowa – On a Friday night, 4-year-old Emma Miller came down with a fever. Her parents gave her medication to reduce the fever and assumed she would be fine.

By Saturday morning, however, Emma’s lips were swollen and red blotches had appeared on her face and were spreading down her back.

Jodi and Andrew Miller took their daughter to their local emergency room. After 18 hours, Emma was transferred by ambulance to University of Iowa Children’s Hospital. “Within minutes, the doctors walked in the door and knew exactly what we were dealing with,” says Jodi.

Emma was diagnosed with Stevens-Johnson syndrome–a rare disorder in which skin mucous membranes react severely to an infection or medication. In Emma’s case, the children’s acetaminophen (Tylenol) or ibuprofen she had taken to reduce her fever had brought about the reaction.

Stevens-Johnson syndrome causes a patient’s skin to blister, and eventually the top layer of skin will die and shed. Emma’s blisters came to cover most of her body, and she lost more than 80 percent of her top layer of skin.

“We had never seen anything before like it,” says Andrew. “Within 24 hours, she was almost on her death bed.”

The Millers were told that Emma’s condition would get worse before it got better. Finally, on the 11th day of her stay in the Pediatric Intensive Care Unit, Emma’s blisters subsided, and she slowly began to grow new skin.

“Just as fast as she got bad, she flipped the switch and got better,” says Andrew. While Emma’s skin was growing back, her doctors were trying to determine the best course of action. They decided the best way to improve Emma’s wounds was to encase her body with a medicated foam for a week. The treatment worked beautifully.

“It was like a new body under there,” says Andrew.

Not only was Emma healed from her Stevens-Johnson syndrome reaction, she left UI Children’s Hospital after 23 days with virtually no scarring.

“We felt absolute joy and relief. I think I jumped up and down and ran down the hallway,” remembers Andrew. “We knew we were going to take her home alive.”

With the help of physical and occupational therapy, Emma was able to regain her strength and start school less than two months after her life-threatening experience. Today, Emma is a busy 5-year-old who loves being outdoors, dancing with her little sister, and playing with her baby brother.

Jodi and Andrew credit pediatric critical care specialist Gwen Erkonen, MD, and the rest of Emma’s care team for her recovery.

“I have so much respect for them, not only as doctors at UI Children’s Hospital, but as people,” Andrew says. “Just really good people.”

“I wouldn’t take my kids anywhere else,” says Jodi. “UI Children’s Hospital saved our daughter’s life.”

Watch Emma’s story HERE.