Stories about: Alan Cohen

Clues to Chiari: A family’s search makes all the difference

Ryan

At 7 months old, Ryan Murphy of Ulster County, NY, was a full-term, healthy, happy baby. He weighed almost 23 pounds—in the 95th percentile for his age.

“Everything was picture perfect until he was around 9 months old,” says his father, Justin. “He was thriving.”

But then things changed. Ryan began having difficulties feeding: He began coughing and choking.

“Over the next few months, it progressively got worse,” recalls his mother, Kerri. “Then solids became a problem. He would gag, throw up, cough.”

But Ryan began losing weight. An ear, nose and throat specialist (ENT) recommended a modified barium swallow test, which showed that Ryan was aspirating liquids into his lungs. Refusing thickened liquids, Ryan could drink only through a low-flow bottle nipple designed for preemies.

Then came an injection of a collagen gel around Ryan’s larynx, on the theory that he might have an abnormal opening in his larynx, a rare condition known as a laryngeal cleft.

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A brain tumor with a happy outcome

Taylor West was suffering from terrible headaches, but they came and went so fast neither she nor her parents were too worried at first. But as the headaches got worse, doctors became worried. A CT scan revealed a large tumor in Taylor’s brain, and less than 10 days later she was undergoing surgery at Boston Children’s Hospital and waiting to find out if the tumor was cancerous.

When Taylor West of Tecumseh, Oklahoma, started complaining of headaches, her mother Lori’s first thought was that she was trying to get out of school: The headaches were worst early in the morning, but by noon Taylor would be up and running around.

“People thought the headaches were just because of stress, but I knew they weren’t,” says Taylor, age 10. “It felt kind of like an electric shock.”

When Taylor began getting sick to her stomach and throwing up, Lori thought perhaps she had a flu bug that was going around. But as weeks and then months went by, she became concerned, and so did the doctors. A neurologist sent Taylor for a head CT scan.

“That evening we got a call saying, ‘get her to the hospital tonight,’” Lori said.

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