On the way to normal feeding for a baby born with a laryngeal cleft
The aerodigestive center and swallowing program work together to support normal eating
Karthik Balakrishnan, MD, FACShas a favorite mug that he keeps in his office at Stanford Medicine Child Health. He got it from Zach and Kristen Levich of Eureka, California. He says, “I know what it is and I know how to fix it.” Words that Dr. Balakrishnan does not remember saying, but that the couple will never forget to hear.
“I get chills thinking about that moment. We didn’t know what was wrong with our newborn, Pierce, and we’ve never been so scared,” Zach says. “Hearing Dr. Balakrishnan say those words were immediate grace and incredible relief.”
First-time parents suspected something was wrong when Kristen tried to breastfeed shortly after Pierce’s birth in July 2021. He couldn’t latch on properly and they heard a strange gurgled when he drank. The couple were sent home from their local hospital, but things did not improve. The congested, wet, gurgling noise Pierce made while feeding was a sign of aspiration, when food, liquid, or saliva intended to be swallowed enters the airways (trachea) and sometimes the lungs.
“We felt so helpless. We were afraid he would choke while trying to breastfeed. We desperately called for answers, and were told we should have an ear, nose and throat [ENT] specialist does a scope study and a swallow study,” says Zach. “But there were no options locally.”
The couple asked to be referred to Stanford Medicine Children’s Health. They got a quick appointment with Dr. Balakrishnan, an ear, nose and throat (ENT) specialist with the Aerodigestive and Airway Reconstruction Center. The centre, one of the busiest in the country, treats children with simple to very complex disorders that affect the airways.
“When we assessed Pierce he was less than a week old. He had moderately severe illness laryngeal cleft it was seriously affecting his ability to swallow,” says Chief Surgeon Dr. Balakrishnan.
Laryngeal cleft occurs during development in the womb when the airway does not form properly, leaving an opening between the esophagus and the airway, inviting aspiration.
Rapid diagnosis of the rare laryngeal cleft
The couple couldn’t believe that Dr Balakrishnan was able to make the diagnoses so quickly, in less than a minute from the start of a fiberoptic swallowing endoscopic evaluation study (FEES), a test that is not commonly available in children’s hospitals. The couple were moved to tears by these reassuring words which they will remember forever. Pierce was admitted immediately that Friday evening and his minimally invasive surgery was performed on Monday.
“In our aerodigestive center, we have a large multidisciplinary team…ENT who intimately understand disorders of the respiratory tract, speech therapists and occupational therapists specialized in babies with swallowing disorders, pulmonologists that focus on aspiration, and gastroenterologists who understand reflux in the context of cleft,” says Dr. Balakrishnan. “We think about these conditions all the time. They are at the heart of our concerns, so it is not difficult for us to catch these disorders of the respiratory tract and swallowing.
The surgery went well, but repairing Pierce’s cleft wasn’t the whole story. He had significant swallowing problems, so he spent weeks recuperating in the Neonatal Intensive Care Unit (NICU). A gastrostomy or G-tube, was placed to ensure that he received adequate nutrition, which he still needs today. Swallowing is an extremely complex process, requiring children to master a series of complex nerve and muscle patterns.
“Elsewhere, his surgery could have been done in the neck, but Dr. Balakrishnan was confident he could do it orally, so it was much less invasive for Pierce and left no scarring,” Zach says.
With a cleft laryngeal in a newborn, it’s common to put in a G-tube and let a child grow, then do surgery later when the child is older. However, this approach carries the risk that the child loses interest in feeding by mouth. The highly specialized team was confident to perform surgery right after birth and then skillfully stimulate her curiosity to eat.
“Pierce never lost his interest in food, thanks to his dedicated parents – mum used to pump him and put him on an empty breast, which was a big positive – and the experts on the subject. Voice and swallow program and the NICU who cared for him afterwards. It all made a big difference for Pierce,” says Dr. Balakrishnan.
“We were so lucky to be at Stanford Children’s, where we received the best of the best care for Pierce,” Zach adds. “Everyone was working towards the same goal and we didn’t have to jump from doctor to doctor. We had a whole team of 10 brilliant people giving their top recommendations.”
Keep Pierce interested in eating
After the surgery, the Voice and Swallow program used their vast knowledge to move at a snail’s pace to introduce oral feeding, starting simply by dipping Pierce’s pacifier in milk to spark interest, while protecting his ways. respiratory.
“As speech and occupational therapists who specialize in swallowing disorders, we have several strategies to elicit interest in eating and to slow the entry of food into the throat, such as thickening liquids and changing breastfeeding positions. to decrease the risk of aspiration,” says April Johnson, MA, CCC-SLP.
“Our the swallow program care team are experts at crossing that middle line between oral feeding and making sure a child gets the nutrients they need to grow through G-tube feeding. We determine how much a child can safely take in per the mouth and then frequently reassess our progress so that the child is always progressing,” says Dr. Balakrishnan. “It may be a long road, but we associate with family all the 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, was not something they wanted to imagine.
“One of the many things I appreciate most about Dr. Balakrishnan is his holistic approach. It was neither black nor white for him, nor for the team. He thought about what was best for Pierce now and in the future,” says Kristen. “I think it was a bit unusual to do the lollipop dips early on, or to encourage breastfeeding, but they kept that perfect balance, and we’re so grateful for that.”
Pierce is an interactive, engaged baby with a wide, welcoming smile. It is well under development.
“Zach and Kristen are great parents. They always put Pierce’s interests first and are easy and rewarding to partner with,” says Dr. Balakrishnan. “We have a wonderful two-way relationship.”
Small steps towards a big and bright future
A few months ago, Pierce graduated to eating mashed potatoes like applesauce, having mastered drinking small amounts of breast milk, something he loves. His parents reveled in his fascination with food. He imitates 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 met speech therapists (speech therapists) in the past six months through telehealth—a convenient option for families who don’t live nearby. Nurses trained them to use the G-tube at home and speech therapists trained them to help her swallow safely.
“Parents know we trust them as people who know Pierce better than anyone, to provide us with great feedback on how he is doing,” Johnson said. “We trust them and they trust us.”
Every few months they come back to Stanford Medicine Child Health for a study of swallowing without radiation which shows food moving through the throat on its way to the stomach. Due to Pierce’s slow but steady progress, his healthcare team is hopeful that he will eventually be able to remove his G-tube and eat normally. “We’re not totally out of the woods, but we celebrate the little things. Pierce eats! Kristen concludes.