South Weber family travels across country for rare lifesaving surgery for newborn

SOUTH WEBER, Davis County — When Nash Child came into the world in September, what should have been a joyful moment quickly turned into a medical emergency.

Before delivery, Megan Child said she stopped feeling him move. Doctors discovered excess amniotic fluid and performed an emergency cesarean section.

"He was blue and not breathing. He coded right there afterwards," Colby Child said.

Nash was diagnosed with congenital lobar emphysema, or an overinflated lung.

"He couldn't breathe. He kept aspirating," his mother said.

Nash was transported to a hospital by a medical helicopter as medical teams worked to stabilize him and search for answers.

It wasn't until later, after a bronchoscopy, that they discovered the underlying cause: a Stage 4 laryngeal cleft — a rare, abnormal opening between the larynx and the esophagus. As a result, when a baby swallows, food and liquid can enter the lungs instead of the stomach. In severe cases, the opening extends deep into the airway and requires complex surgery.

The condition is so uncommon that most doctors see only a handful of cases in their careers.

Colby and Megan Child were told their baby needed to reach a certain weight before surgery could be performed. But they feared time wasn't on their side.

"We were looking at three months out to even go to a surgery, and he was living minute by minute, hour by hour," Megan Child said. "That game plan wasn't going to work for us."

Determined not to wait, the parents began researching options, looking beyond Utah for surgeons experienced in treating severe laryngeal clefts.

"It's OK to do your own research," Colby Child said. "It's OK to look for other options to give your child the best chance possible."

They found a pediatric surgeon in Florida, Dr. Jason Smithers, who had successfully performed multiple Stage 4 laryngeal cleft repairs. After more than a month in hospitals, the family made the trip in late October, staying five weeks for surgery and recovery.

"All the nurses were just so cautious of his situation; they'd seen it before, and they knew what was going on," Colby Child said.

The surgery was a success, and today, 4 1/2-month-old Nash is thriving.

Throughout the journey, the family says they were overwhelmed by support from loved ones and the community.

The road ahead may include more challenges, as Nash currently relies on a feeding tube with hopes of one day being able to eat like a normal child, but the progress so far has given the family hope.

"It's amazing to see how far he's come," Colby Child said. "We are so grateful for that."

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