Kid Captain: Leah McClain

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By University of Iowa Stead Family Children’s Hospital

IOWA CITY, Iowa — Jan. 30, 2014, seemed like a normal night for the McClain family until then-7-year-old Leah walked into their living room. Her parents, Greg and Sara, instantly knew something wasn’t quite right with their daughter.
“We asked her, ‘What’s going on?’ and she didn’t have an answer…she wasn’t responding,” remembers Sara.
“Every passing minute, she was losing the ability to stay focused or walk,” adds Greg. “I scooped her up, put her in the car, and took her over to our local emergency room.”
At the local hospital, Leah’s condition continued to worsen.
“She could barely hold her head up,” says Greg. “It took about 45 minutes before her symptoms developed to the place that they realized she was having a seizure.”
The family lived in Knoxville, Iowa, at the time, and Leah’s local doctors arranged for her to be airlifted to a Des Moines hospital.
“In just a moment, everything changed. There were no warning signs that this was coming,” says Sara. “The ER doctor told my husband, ‘I hope your daughter’s alive when you get to the next hospital.'”
Leah spent several days in the Des Moines hospital under observation. She began to improve, but the cause of her seizure still wasn’t determined.
“She seemed to be back to normal, and the doctors were telling us that this could be an isolated event and it may never happen again,” recalls Greg.
Two months later, however, Leah had another life-threatening seizure. Again, she was transferred to Des Moines. The McClains began to question if Leah was getting the specialized care she needed.
“We wanted something more specific because Leah had many other symptoms that weren’t neurological, but there was no one willing to put all of those together,” says Sara.
Greg met with Leah’s local pediatrician, who recommended University of Iowa Stead Family Children’s Hospital. Upon arrival, the McClains met with a team of pediatric specialists.
“What stood out to us was every symptom that we mentioned, it seemed like there was a specialist here for that,” says Greg.
A 48-hour EEG (a test that measures brain waves) revealed Leah was experiencing constant subclinical seizures, and it soon became clear that brain surgery was her best treatment option.
First, Leah underwent a procedure in which electrodes were placed on her brain to reveal where the seizures were originating. She then underwent neurosurgery to stop the seizures from spreading across her brain, greatly reducing her seizure symptoms.
“During the second surgery, they took several biopsies of Leah’s brain,” says Sara. “The biopsies revealed she had cortical dysplasia, an abnormality in brain development that occurs in utero. We learned, for the first time, this was something she was born with.”
Since her surgery, Leah is back to her old self. She has some slight vision loss on her left side, and she continues to take medication to control any seizure activity that might still occur. The McClains now live in Illinois, which doubles their travel time to UI Stead Family Children’s Hospital, but they don’t mind the trip.
“It never occurred to us to go anywhere else because of the care we’re receiving here,” says Greg. “It has renewed our faith that when you do go through a hard time, when something totally unexpected happens, there are tremendous people and places that you can come to.”