The headaches continued throughout the spring, so Ashlyn's pediatrician ordered an MRI. When he saw the results, he referred her directly to Ian Butler, MD, director of the pediatric neurology division at The University of Texas Medical School at Houston. Butler consulted with Stephen Fletcher, DO, chief of pediatric neurosurgery at Children's Memorial Hermann Hospital.
Further tests ordered by the two doctors confirmed a diagnosis of Chiari malformation, a disorder affecting the cerebellum, the part of the brain that integrates sensory perception with movement.
Severe headaches in the lower back of the head are the most common childhood symptom of Chiari malformation, according to Fletcher. In children with the malformation, parts of the cerebellum extend into the spinal canal, increasing pressure and inhibiting the flow of spinal fluid.
"Two small protrusions at the base of the cerebellum, called tonsils, are normally positioned inside the skull," he says. "In Type 1 Chiari malformation, the most common and least severe form of the condition, the tonsils extend down into the spinal canal. They act like a cork in a bottle. If the cork is too tight, the spinal fluid can't move as it should, causing severe headaches."
Ashlyn went into surgery on August 13, 2004, accompanied by her mother, who put on scrubs to be with her daughter until the anesthesia took effect. "Seeing the operating room and the equipment they were going to use on Ashlyn scared me," Karrie says. "But I thought they must really care a lot about us to let us go together to surgery."
During the four-hour operation, the surgeon repaired the protrusion of the tonsils into the spinal cord by removing a piece of skull as well as a vertebra. "When Dr. Fletcher came into the waiting room with a giant smile on his face,
I knew Ashlyn was fine," Karrie says. "He was wonderful before the surgery and afterwards when she was recovering. He told me to call him on his cell phone anytime I had concerns or wanted to talk. I thought that said a lot about him."
Although she has a number of other medical conditions, including a slight heart murmur and a tiny hole in her heart, Ashlyn's prognosis is good. She's one of many children who have benefited from the multidisciplinary approach to care at Children's Memorial Hermann and the hospital's affiliation with The University of Texas Medical School at Houston. "Ashlyn's case is a wonderful example of how cooperation between multiple specialties can lead to a good outcome," Fletcher
says.
Today, Ashlyn is a familiar face to the staff in neurology, pulmonology, genetics, cardiology, urology and endocrinology. "She started at Children's Memorial Hermann and UT when she was a little older than 2, and I'm still taking her there regularly because of her complicated health problems."
Now 6-and-a-half years old, Ashlyn weighs only 33 pounds and stands only 36 inches tall. Her sister, who's 10-and-a-half months younger, is already three inches taller. Adapting to her size is a challenge, her mother says. "Some days she does well; other days she has a hard time. She's starting to figure out that she's not the same size as the other kids in her class and that bothers her, but we're working through it. She has a great personality and that's a big plus."
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