On the Road to Normal Eating for Baby Born With Laryngeal Cleft

Aerodigestive center and swallow program work together to make normal eating possible

Karthik Balakrishnan, MD, FACS, has a favorite mug that he keeps in his office at Stanford Medicine Children’s Health. He received it from Zach and Kristen Levich, from Eureka, California. It says, “I know what it is and I know how to fix it.” Words Dr. Balakrishnan doesn’t remember saying, but ones the couple will never forget hearing.

“I get chills thinking about that moment. We didn’t know what was wrong with our newborn, Pierce, and we have never been so scared,” Zach says. “Hearing Dr. Balakrishnan say those words was immediate graciousness and such an incredible relief.”

The first-time parents suspected something was wrong when Kristen tried breastfeeding shortly after Pierce was born in July 2021. He couldn’t latch on properly, and they heard a strange gurgling noise when he drank. The couple was sent home from their local hospital, but things didn’t get better. The congested, wet, gurgling noise Pierce was making while feeding was a sign of aspiration, when food, liquid, or saliva that’s intended to be swallowed enters the airway (trachea) and sometimes the lungs.

“We felt so helpless. We were worried he was going to choke while trying to breastfeed. We desperately called around to get answers, and we were told that we should have an ear, nose, and throat [ENT] specialist perform a scope and a swallow study,” Zach says. “But there were not any options locally.”

The couple asked for a referral to Stanford Medicine Children’s Health. They got a quick appointment with Dr. Balakrishnan, an otolaryngologist (ENT) with the Aerodigestive and Airway Reconstruction Center. The center, one of the busiest in the country, treats children with simple to highly complex disorders that affect the airway.

“When we evaluated Pierce, he was less than a week old. He had a moderately severe laryngeal cleft that was seriously affecting his ability to swallow,” says Dr. Balakrishnan, surgeon in chief.

Laryngeal cleft occurs during development in the womb when the airway doesn’t form properly, leaving an opening between the esophagus and airway, inviting aspiration.

Quick diagnosis of rare laryngeal cleft

The couple couldn’t believe that Dr. Balakrishnan was able to make the diagnoses so quickly—in less than one minute after initiating a fiberoptic endoscopic evaluation for swallowing (FEES) study, a test that’s not commonly available at children’s hospitals. The couple was brought to tears by those reassuring words that they will remember forever. Pierce was admitted immediately on that Friday evening, and his minimally invasive surgery was performed on Monday.

“At our aerodigestive center, we have a large multidisciplinary team—ENTs who intimately understand airway disorders, speech-language pathologists and occupational therapists who specialize in babies with swallowing disorders, pulmonologists who concentrate on aspiration, and gastroenterologists who understand reflux in the context of cleft,” Dr. Balakrishnan says. “We think about these conditions all of the time. They are right at the front of our minds, so it’s not hard for us to catch these airway and swallowing conditions.”

The surgery went smoothly, but repairing Pierce’s cleft was not the whole story. He had significant problems with swallowing, so he spent weeks recovering in the Neonatal Intensive Care Unit (NICU). A gastrostomy, or G-tube, was placed to ensure that he received proper nutrition, something he still needs today. Swallowing is an extremely complex process, demanding that children master a series of intricate nerve and muscle patterns.  

“Somewhere else, his surgery might have been done through his neck, but Dr. Balakrishnan was confident he could do it orally, so it was much less invasive for Pierce and didn’t leave any scars,” Zach says.

With laryngeal cleft in a newborn, it’s common to put in a G-tube and let a child grow, and then do surgery later when the child is older. Yet this approach comes with the risk of the child losing interest in feeding by mouth. The highly specialized team was confident in performing surgery right after birth and then skillfully stimulating his curiosity to eat.

“Pierce never lost his interest in eating, thanks to his dedicated parents—mom was pumping and latching him onto an empty breast, which was a big positive—and to the experts in the Voice and Swallow Program and the NICU who cared for him afterwards. It all made a big difference for Pierce,” Dr. Balakrishnan says.

“We were so blessed to be at Stanford Children’s, where we received the best of the best care for Pierce,” Zach adds. “Everyone was working toward the same goal, and we didn’t have to bounce around from doctor to doctor. We had a whole team of 10 brilliant people giving their best recommendations.” 

Keeping Pierce interested in eating

After surgery, the Voice and Swallow Program used its vast knowledge to move at a snail’s pace to introduce oral feeding—starting simply by dipping Pierce’s pacifier in milk to create interest but at the same time protecting his airway.

“As speech-language pathologists and occupational therapists who specialize in swallowing disorders, we have several strategies to create interest in eating and to slow food down as it enters the throat, such as thickening liquids and changing breastfeeding positions to decrease the risk of aspiration,” says April Johnson, MA, CCC-SLP.

“Our swallow program’s care team are experts in walking that middle line between oral feeding and ensuring a child gets the nutrients they need to grow from G-tube feedings. We figure out how much a child can safely take by mouth and then frequently reassess our progress so the child is always moving forward,” Dr. Balakrishnan says. “It can be a long road, but we partner with the family the whole time.”

Zach and Kristen are extremely grateful that the team maintained Pierce’s desire to eat. The alternative, living with a G-tube long-term or even forever, wasn’t something they wanted to imagine.

“One of the many things I appreciate most about Dr. Balakrishnan is his holistic approach. It wasn’t black or white for him, or for the team. He thought about what was best for Pierce in the present and future,” Kristen says. “I think it was a little out of the ordinary to do the pacifier dips early on, or to encourage breastfeeding, but they maintained this perfect balance, and we are so grateful for that.”

Pierce is an interactive and engaged baby with a wide and welcoming smile. He’s right on track developmentally.

“Zach and Kristen are great parents—they always put Pierce’s interests first, and they are easy and rewarding to partner with,” Dr. Balakrishnan says. “We have a wonderful two-way relationship.”

Small steps toward a big, bright future

A few months ago, Pierce graduated to eating puree like applesauce, having mastered drinking small amounts of breast milk, something he loves. His parents revel in his fascination with food. He mimics them with his mouth when they eat.

“He’s still not able to breastfeed, but Kristen hasn’t missed a beat. She pumps like clockwork, four times a day. She never gave up even when it was hard,”  Zach says.  

The couple has met with speech-language pathologists (SLPs) over the last six months via telehealth—a convenient option for families that don’t live nearby. Nurses trained them how to use the G-tube at home, and SLPs trained them in how to help him safely swallow.

“The parents know that we trust them as the ones who know Pierce better than anyone, to provide really good feedback to us about how he is doing,” Johnson says. “We trust them and they trust us.”  

Every few months they return to Stanford Medicine Children’s Health for a radiation-free swallow study that shows the food moving down the throat on its way to the stomach. Because of Pierce’s slow but steady progress, his care team is very hopeful that he will be able to eventually get his G-tube out and eat normally. “We are not totally out of the woods, but we celebrate the little things. Pierce is eating!” Kristen concludes.

Learn more about the Aerodigestive and Airway Reconstruction Center >