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From ICU to Our Children's House to Home Again

April 30, 2015

By Patrick McGee

The Kaighan family’s experience with Children’s started abruptly in 2010. Emmy, then 3 years old, would not get out of bed, and she would not speak. She just cried. If her mother sat her up, she cried more.

Her mother took her to Children’s, where she had a spinal tap and an MRI. Doctors diagnosed her with acute disseminated encephalomyelitis (ADEM), a rare disease that attacks healthy brain tissue.

Such a medical emergency is every parent’s nightmare, but the Kaighans found reassurance in the competence and interaction of the team of professionals that bustled around their daughter at Children’s.

“They were very interactive in working with each other and having people from different specializations come in and consult on the case,” Emmy’s mother, Karen Kaighan, said. “There were no egos. They deferred to the parents, and they weren’t afraid to try things.”

Emmy had to be put into a medically induced coma to calm the swelling in her brain. Neurologist Dr. Benjamin Greenberg became part of the team and told Emmy’s parents he had studied ADEM and knew how to treat it.

Dr. Greenberg is director of the Transverse Myelitis and Neuromyelitis Optica Program – which is one of only two U.S. programs of its kind – and the Neurosciences Clinical Research Center. He is also a Cain Denius Scholar in Mobility Disorders at UT Southwestern Medical Center.

Mrs. Kaighan said the team seemed surprised when Dr. Greenberg recommended quadrupling one medicine, but they deferred to his expertise – and it worked.

Emmy still could not speak when she came out of the coma, but she could nod and shake her head. Yes, she knew who her father was. Yes, she wanted her stuffed bunny. No, she did not want to see her brother. Later on she said, “Daddy.”

“It was an incredible experience,” Emmy’s father, Mike Kaighan, said. “You’re not going to get better care anywhere else.”

After 50 days in Children’s intensive care unit, Emmy was released for rehabilitation therapy to Our Children's House. She had to relearn nearly everything, including how to walk and eat. She quickly picked up hopping, skipping and running, then became more coordinated at each of them. She is still improving on some skills such as handwriting, but she appears to be a happy, healthy kid who enjoys school. Now 8 years old, Emmy retells jokes that the nurses at Children’s told her and excitedly burrows through her closet to pull out Red Balloon Run & Ride keepsakes and show them to a visitor.

“We’re so grateful for everything we have been given here with a second chance,” Mrs. Kaighan said.

That gratitude drives the family to participate in the Red Balloon Run & Ride every year. Friends, family members and even some of Emmy’s former nurses make up the team, called TNT, which stands for Trauma Neuro Team. Funds the team raises benefits the trauma unit where Emmy was treated. Teams can designate which area of Children’s they want their fundraising to benefit.

 

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