Unraveling the mystery of Rylan’s respiratory problems

Rylan is Destinee Davidson’s second child, but in some ways, he feels like her first. “Our older son, Bryce, has always been healthy,” she explains. “With Rylan, I feel like a first-time mom because everything is so new.”

Rylan has been keeping Destinee and her husband, Bradford, on their toes since the day he was born. The pregnancy had been healthy and uneventful, so it came as a shock to the Davidsons when Rylan was diagnosed with total anomalous pulmonary venous return (TAPVR). In this rare heart defect, the blood vessels that drain the lungs aren’t connected normally to the heart. He underwent his first open-heart surgery in Boston Children’s Heart Center when he was just 4 days old.

A new diagnosis: laryngeal cleft

A second surgery followed two months later. But Rylan’s heart wasn’t his only challenge. A modified barium swallow study revealed that the little boy was aspirating, or inhaling liquid into his lungs, when he tried to eat. When the problem didn’t resolve over time, Dr. Reza Rahbar, director of the hospital’s Center for Airway Disorders, recommended Rylan be evaluated further.

Indeed, testing revealed that he had a type II laryngeal cleft. A laryngeal cleft is an abnormal opening between the larynx and the esophagus through which food and liquid can pass through the larynx into the lungs, causing a number of problems including aspiration.

A bit of a medical mystery

The next few years held more procedures: surgical repair of the laryngeal cleft by Dr. Rahbar, as well as a third open-heart surgery by Dr. Sitaram Emani. And another diagnosis followed: Williams syndrome, a rare developmental disorder that can affect many parts of the body, including the heart and blood vessels.

Rylan now sees about 10 doctors at Boston Children’s — and he’s a bit of a medical mystery. Recurrent upper respiratory infections and asthma landed him in the hospital for six weeks last winter, some of that time spent in the intensive care unit. “Dr. Rahbar says he’s one of the more severe cases he’s seen in terms of kids with laryngeal cleft getting pulmonary infections,” says Destinee. “We’re still trying to figure out why.”

Finding a community

Meanwhile, Rylan and his parents have found support and guidance by connecting with other families. Destinee and a friend have formed a Facebook group for families whose children have been in Boston Children’s Cardiac Inpatient Unit. “We share tips and tricks for being in the hospital and navigating the experience — things we wish we had known,” she explains.

Now 3 years old, Rylan is an outgoing kid who loves being outside, playing with LEGOs, and attending preschool. His open personality and lack of “stranger danger” — a characteristic of Williams Syndrome — may pose safety problems later on. But for now, his friendliness is an asset. Prior to the COVID-19 pandemic, he hugged every person in line at his brother’s school pickup, says Destinee. “He loves everyone.”

Learn about the Center for Airway Disorders.