Mighty Blog

Breathing easier: The Kid Experts at Children’s Minnesota identify and fix rare congenital defect of newborn’s esophagus

Paige and Michael Davis marveled at their newborn baby boy taking in his first feedings of colostrum, a nutrient-rich “pre-milk” that boosts a baby’s immune system. Every moment with baby Murphy – named for a character in “Interstellar,” the Davis’s favorite movie – was so brand new and amazing. And yet on that April day in 2023, Paige and Michael had a sense that something just didn’t seem right.

“Murphy would nurse well, but in the process his breathing sounded noisy – almost ‘junkie’,” said Paige. “It was as though there was something in his throat and he was having a hard time swallowing.”

Paige asked her care team at the hospital where she gave birth to listen to Murphy’s lungs while he nursed. The new mom recalled that those providers attributed the noises to most likely the newborn learning to swallow.

Still Paige and Michael were concerned. “From that moment on, I was in constant worry that Murphy was choking,” she said.

First night at home

A few days later, Murphy was discharged from the hospital and spent his first night at home. The “junkie” sounds coming from Murphy continued as he nursed. Paige and Michael were distraught, tired from being unable to sleep, and unsure of what to do. The very next morning, they took Murphy to the Children’s Minnesota emergency room in St. Paul.

At this point, Murphy was taking in so little milk that it was difficult for the lactation consultants in the ER to hear the kind of sounds that Paige and Michael had been hearing when Murphy nursed. The ER team confirmed that his bilirubin and oxygen levels were fine, and the Davis family was sent home after several hours of observation, knowing they had an appointment with Murphy’s pediatrician the next day.

At the appointment the next morning, Rebecca Knutson, a certified physician assistant and certified lactation consultant at the HealthPartners Como Clinic, quietly listened to Murphy’s breathing as Paige nursed.

“Rebecca listened carefully and agreed that something didn’t sound right,” Paige said, “She was concerned about the potential risk of milk going into the lungs instead of the stomach, the process is called aspiration. She quickly worked to get Murphy into an appointment for an urgent swallow study at Children’s Minnesota.”

In the meantime, the Davises went home again with thickened formula to help prevent Murphy from aspirating fluid into his lungs.

“We didn’t go anywhere without bulb syringes in our pockets in case he choked,” Paige said. “Murphy slept a lot and ate very little – he was telling us something was wrong.”

“We were afraid to even lay him down,” Michael said. “We took turns holding him upright day and night. Holding him was both wonderful and anxiety inducing. You could just hear his body working.  It was strenuous and neither of us could really sleep.”

Revealing swallow study

The Davises were hopeful that the swallow study appointment at Children’s Minnesota’s hospital in St. Paul would provide answers. Within five minutes of starting the test, the radiologists could see that when Murphy swallowed the test’s special liquid, it was flowing from Murphy’s esophagus to his airway rather than his stomach. This revealed Murphy had a rare birth defect where the esophagus (the tube that connects the throat to the stomach) did not develop normally. Murphy’s version is called a congenital H-type Tracheoesophageal Fistula (TEF). TEF which commonly occurs with esophageal atresia where the esophagus ends in a blind pouch is a congenital condition that develops in utero from unknown causes in one in 3,500 live births.  However, in Murphy’s case he did not have the associated esophageal atresia.

“Ironically, learning Murphy’s diagnosis in that moment was the most reassuring news to hear,” Paige said. “I was losing my mind at that point, trying to figure out what was wrong.”

Murphy was immediately admitted to the Children’s Minnesota Neonatal Intensive Care Unit (NICU) in St Paul, and was quickly scheduled for surgery to repair the rare condition. Children’s Minnesota is one of only two places in the Twin Cities metro area with the multidisciplinary team and specialized resources to treat this condition surgically.

“I was definitely feeling nervous – the situation was so surreal,” Michael said. “At the same time, we felt comforted by the great team that fell into place.”

Dr. James Fisher, pediatric general and thoracic surgeon at Children’s Minnesota – along with his colleague Dr. Joseph Lillegard, the head of open fetal surgery at the Midwest Fetal Care Center, a collaboration between Allina Health and Children’s Minnesota – repaired the area that had erroneously linked Murphy’s fully formed tracheal airway to his esophagus. The surgeons worked with precision around the child’s delicate vocal chords to make the correction.

Successful surgery and more good news

Murphy’s rapid 10-day recovery in the hospital included resting his vocal cords while his voice came back and he worked on oral feedings. While in-patient and healing, the care team assessed Murphy for additional conditions that occur in about half of babies with tracheoesophageal fistula/esophageal atresia.

“It seemed everything went as well as it possibly could,” said Michael. “Out of what happened, we had the best-case scenario, and we were in the right place to surgically repair it and feel confident about it.”

Returning to life at home with new insights

“Murphy is very loud and knows how to scream now, he loves his milk and is gaining weight,” Paige said. “Gratefully, the things we are dealing with now seem like normal newborn baby concerns.”

Paige and Michael want other parents to know that this experience taught them to follow their instincts as parents.

“If you know in your heart that something is wrong, listen to it,” Paige said.

“It was a lifesaver to have the members of the medical team as our advocates and helpers through this whole confusing ordeal,” said Michael. “The cared for us extremely well and we are eternally grateful for everyone.”

Murphy’s family shares his story with WCCO-TV