Taking on the world: Lonnie Lu’s experience with laryngeal cleft

laryngeal cleft repair
Lonnie Lu and her mom at Boston Children’s Center for Airway Disorders.

Not every little girl gets a visit from a Disney princess on her birthday, but Lonnie Lu received just such a surprise when Princess Elena stopped by her party last month. Her admiration may go beyond a love of colorful dresses. Minus one evil sorceress and an enchanted kingdom, the character’s tale of strength and resilience might as well be Lonnie Lu’s story, too.

A mother’s intuition

Now age 4, Lonnie Lu came into her parents Patti and Ricardo’s lives at 7 months old, when the couple decided to foster her and her older sister, Maya. “It was clear right away that something was wrong,” remembers Patti. “She was throwing up many times a day.” Meanwhile, the little girl had trouble eating — and trips to the beach were challenging because she would swallow and then aspirate water when she paddled in the ocean. Yet multiple visits to specialists near their home in Florida failed to identify the problem.

Frustrated, Patti did what most modern parents do: She looked for answers online. There, she found some clues to her daughter’s condition. “Based on what I read, I asked Lonnie Lu’s ear, nose and throat specialist if he thought she might have a laryngeal cleft,” she says. Sure enough, an endoscopic procedure confirmed her suspicion.

repair for laryngeal cleft

Care and support

But the family’s journey was just beginning. After surgeons in Florida were unable to successfully repair the cleft, Patti returned to the internet for help. “We’re originally from New York, so we started searching for specialists in the Northeast,” she says. That search brought them to Boston Children’s Hospital and Dr. Reza Rahbar, co-director of the Center for Airway Disorders (CAD).

Even as the family endured the stress of a rare diagnosis, they were celebrating, too: In 2016, they formally adopted Lonnie Lu and Maya. With their family now complete, they traveled to Boston for what would be the first of two surgeries to repair Lonnie Lu’s laryngeal cleft. They’re trips made easier by Rahbar’s gentle manner and the care team’s organization. “They help streamline all our appointments and offer a lot of support,” says Patti, who points to a Facebook group started by another CAD parent as a source of encouragement.

center for airway disorders

Ready to take on the world

That support helps the family relax and enjoy the special moments in between doctor visits, whether that means constructing LEGO mansions or cooking with mom. And unlike many kids her age, Lonnie Lu loves trying new foods — even pesto. “We really credit feeding therapy with that,” laughs Patti. “She loves to eat.”

As she plays in the Boston Children’s lobby the day before a follow-up visit in May, Lonnie Lu introduces new friends to her beloved baby doll, whose name changes on a whim. “What’s her name today?” asks Patti. “Is it Sofia? Baby Gabby?”

“It’s Baby Sofia,” Lonnie Lu tells her with a shy but determined smile. She briefly touches the colorful cartoon stickers stuck to her dress, small tokens from her visit with Rahbar for a preoperative swallow study. And then she returns to the toy — focused, resolute and ready to take on the world — just like Princess Elena.

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