Stories about: Scott Pomeroy

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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