Trusting their instincts: Family finds help for laryngeal cleft

laryngeal cleft treatment

For some kids, the hospital can be a scary place, where even doctors with the best intentions poke, prod and serve up yucky-tasting medication. But for three-year-old Jack Steinberg, a visit to Boston Children’s Hospital is worth the trip from his home in Great Neck, New York. “No, it’s really fun,” Jack’s mother, Jessica, recently overheard him telling his older brother, Henry, who isn’t a fan of doctor visits. “They give you toys and stickers there!”

Jack’s cheerful attitude seems at odds with his recent health challenges. In fact, says his father, Noah, “If you saw him walking down the street, you’d never know anything was wrong with him.”

Yet just a year ago, mealtime was traumatic for Jack: He had begun gagging and vomiting when he tried to eat or drink. He wasn’t sleeping well, was irritable and had started snoring. Friends suggested his problems might simply be behavioral. “But my mother’s instinct kicked in,” says Jessica. “I just knew something wasn’t right.”

On their pediatrician’s recommendation, Jessica and Noah brought Jack to their local medical center for evaluation — but a clear diagnosis still eluded them. “Jack needed to see several different experts, but we had to figure out which ones to see and when. There wasn’t any kind of coordination,” explains Jessica. “It wasn’t very efficient — or reassuring.”

laryngeal cleft

Finally getting answers for laryngeal cleft

Having grown up in Massachusetts, Jessica was familiar with Boston Children’s and reached out to the Center for Airway Disorders (CAD). “It just took one call and they were on the case,” she says. “We were able to get an appointment for Jack with multiple specialists at once. We had back-to-back meetings, a modified barium swallow, and x-rays all in the same day.”

The center’s director, Dr. Reza Rahbar, believed it was likely that Jack had a laryngeal cleft. Children with this condition are born with an abnormal opening between the larynx and the esophagus. This can allow food and liquids to pass into the lungs, causing a number of eating and breathing problems.

Although Jack’s cleft was type I — the mildest form of the disorder — he continued to aspirate even after being prescribed a diet of thickened liquids, an initial treatment for mild laryngeal clefts. He recently returned to Boston Children’s to undergo surgical repair of the cleft and is recovering well.

While Jack’s family is relieved that most of Jack’s health struggles appear to be behind them, they’re grateful for the time spent at the hospital. “Dr. Rahbar has a very gentle approach and it’s a wonderful environment for children,” says Noah. “It’s not a sad experience for us to come here; it’s a happy one.”

larnygeal cleft repair

On the mend

As Jack continues to heal, he’s eager to get back to his favorite pastimes, such as playing with toy trucks, cooking with his mom and shooting “hoops” with his brothers (using laundry baskets in their living room). A sweet but fearless kid, he’s “like wasabi dipped in honey,” says Noah. As the middle sibling of three boys, Jack is used to making his voice heard — but even tough little guys need someone to speak up for them sometimes.

“I want other parents to understand that your child doesn’t always have to seem super sick to have this disorder. Know your kid and trust your instincts. If you think something is wrong, it probably is,” says Jessica. “You have to go where the experts are, even if you have to travel — you have to advocate for your child.”

Learn more about the Center for Airway Disorders at Boston Children’s Hospital.