Child Thrives After Laryngeal Cleft Surgery

It’s hard not to worry when infants get their first cold. They can barely cough to clear their lungs, and it seems like they will suffocate from stuffiness. Parents can handle it when their baby gets sick now and then, but when it happens over and over again, it’s beyond worrisome—it’s downright frightening. That’s how it felt for Ilsin Rodriguez.

“It was really scary to have a sick baby and not be able to figure out why,” Ilsin says. “Every doctor seemed confused, and everyone had a different idea of what was wrong.”

Ilsin’s son Xzavian caught a cold every few weeks, starting at 2 months old. He also had ear infections and a chronic, wheezy cough that never went away. Clearly Xzavian was uncomfortable, because he was fussy and lethargic, and rarely happy.   

Ilsin was desperate for answers. She went from doctor to doctor, had tests run, gave him medicines, and eased his discomfort with hours of cuddling, but nothing helped. Little did Ilsin know that many of Xzavian’s symptoms added up to an extremely rare condition—laryngeal cleft.   

Luckily, Xzavian was referred to an ear, nose, and throat specialist, which brought the family to Stanford Children’s Health. Here, she and her husband, Miguel, met Kara Meister, MD.

“With Dr. Meister and her team, it was a whole different experience. I no longer felt afraid or stressed. I knew I could trust them to find an answer,” Ilsin says. “They dug deep, and that gave me confidence.”

Dr. Meister examined Xzavian, but she didn’t see what she typically sees with chronic cough. That’s when she gathered the Aerodigestive and Airway Reconstruction team to take a wide-angle look at what was going on with Xzavian.

“Kids like Xzavian, who are bounced from doctor to doctor, are the ones who benefit the most from our collaborative, multidisciplinary team approach,” says Dr. Meister.

Members of the Aerodigestive and Airway Reconstruction Center team, which includes a pediatric otolaryngology–head and neck surgeon (ENT), gastroenterologist, general surgeon, pulmonologist, speech-language pathologist, and registered dietitian, sat down with Ilsin and Miguel and their parent mentor to review tests and get to the root of Xzavian’s symptoms.

To aid their diagnosis, they performed a triple endoscopy, an investigative procedure that’s proved especially effective in finding the cause of chronic cough. Triple endoscopies give a view of the entire aerodigestive tract, from the nose and mouth to the windpipe and esophagus. Doing a triple scope means less stress on children since one procedure is all that is needed—a part of Stanford Children’s family-centered care.

“As a team, we were all there to see it through the lens of our own specialty. During the scope, I discovered a valley between his voice box and his esophagus—a laryngeal cleft,” Dr. Meister says.

According to the National Institutes of Health, laryngeal cleft occurs in just one in every 10,000 to 20,000 children. While Xzavian was in the womb, his voice box and his esophagus, the muscular tube that connects the throat and stomach, didn’t develop separately as they should. Instead, an opening connected the two, allowing food and liquid to enter his lungs.

“When I learned it was laryngeal cleft, I got teary, but I had full confidence that we would get the care we needed at Stanford,” Ilsin says. “Everyone is so nice, and they take the time and really pay attention.”

With the help of speech-language pathologist Jenna Bernstein, the aerodigestive team put Xzavian on a thick liquid diet, hoping to keep morsels from passing through the cleft into his lungs. Xzavian improved, but not enough, according to his aerodigestive pulmonologist, Esmeralda Morales, MD. That was when they decided to do surgery to close the cleft.

“This surgery is typically done at advanced aerodigestive and airway reconstruction centers like ours,” Dr. Meister says. “Stanford Children’s Health has one of the most robust centers of its kind in California, and possibly in the entire West. The center sees approximately 75 cases of laryngeal cleft each year, resulting in about 15 to 20 surgical repairs.”

Despite laryngeal cleft being rare, Dr. Meister describes it as not all that “weird and wonderful.” Advanced centers like the Stanford Children’s Health Aerodigestive and Airway Reconstruction Center are used to treating rare conditions, along with more common ones.

If Ilsin hadn’t set out on a quest to find someone to help Xzavian, he wouldn’t be the active toddler he is today. Her persistence paid off, big-time.

“Ilsin is one of those proactive moms who won’t stop until they get an answer. She was determined to figure out why he was sick and help him get better,” Dr. Meister says.

Today, Xzavian is a changed child. Having the corrective surgery stopped his symptoms and sparked his true personality—a joyful little boy who loves to play ball, laugh, and follow his big sister, Evelyn, around.

“Seeing him healthy makes me so happy,” Ilsin says.

To learn more, visit aerodigestive.stanfordchildrens.org

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