Catching his breath

Born premature at 26 weeks, David Cumbie was just 11 weeks old when doctors in Boston performed a tracheostomy to bypass his obstructed airway. More than two years later, a team of UNC Children’s specialists gave him back his breath—and his voice.

Catching his breath click to enlarge David and his twin sister, Mary Camden, blow bubbles in Pullen Park.

Four-year-old David Cumbie, Jr., blows bubbles alongside twin sister, Mary Camden, in Raleigh’s Pullen Park, infant brother, Bennett, nearby in the arms of their parents, Langley and David, Sr.

With each exhale, a cascade of bubbles springs forth from the wand, the boy’s very breath caught captive for a brief time, traveling visible on the breeze until, one by one, the bubbles pop.

It’s an idyllic scene, one a parent could easily take for granted. But not the Cumbies. Those bubbles are David’s breath on the wind, a miracle years in the making.

The story starts more than two years before David and Mary Camden were born, in East Africa where Langley and David, Sr., were missionaries. It was there the Cumbies’ first child, Madeline Jane, was born premature at 26 weeks in June of 2008. She lived just two hours.

Six years later, the memories are still difficult to relive—a new doctor who had never delivered a baby and didn’t know infant CPR, medical equipment too big for the fragile preemie.

“Knowing what I know now, I cringe at what that doctor did trying to keep her alive,” says Langley. “The nurse struggled to keep an adult-sized, low-flow cannula in her tiny nostrils. It’s heartbreaking.”

David Cumbie weighed just 2 lbs. at birth.
Two years later, in August 2010, the couple was living in Boston, Langley carrying their twins, when the unthinkable happened: Langley went into labor—again at 26 weeks, a circumstance determined to be a terrible coincidence. Little David weighed 2 lbs., his sister Mary Camden just 1 lb., 14 oz.

The new parents couldn’t help but think of their firstborn, but this time they had the benefit of being at Boston Children’s, one of the nation’s preeminent children’s hospitals. Mary Camden suffered some airway problems and would later be diagnosed with asthma, but her immediate challenges improved much more quickly than David’s, despite her being smaller.

The reason was David’s airway; it was severely under developed, with an opening just one millimeter wide, an extreme case of what’s called subglottic stenosis. The newborn couldn’t breathe or eat unaided. He couldn’t even cry. At 11 weeks old, after several close calls, his doctors performed a tracheostomy, bypassing his obstructed airway with a surgical opening and special breathing tube placed in his neck. The trach would help him breathe, but without air flowing past his vocal cords, it would leave him without a voice.

Mary Camden was discharged after 99 days in the NICU. David came home on oxygen 20 days later, the week before Christmas. The family soon learned how to manage his complex care at home, suctioning David’s trach at all hours of the day and night and changing his tracheostomy tube every two weeks.

“Our house was an ICU for two years,” recalls Langley. “The scariest of all, David was on a monitor all that time. An alarm would sound if his trach came loose, and we literally had 20 seconds to fix it before getting into serious trouble.”

Just before the twins' first birthday, the Cumbies relocated to Raleigh, N.C., a move that petrified Langley.

“I was terrified to leave all of David's specialists, especially his ENT,” explains Langley. “That doctor, surely not knowing how far Winston-Salem is away from Raleigh, sent us to an ENT who had trained under him. After we drove the long drive to Winston, that doctor smiled at us and said, ‘I'm flattered you're here, but you have one of the best children's hospitals in the world in your backyard.’ He referred us to UNC Children’s, and we are forever grateful.”

David with his otolaryngologist, Dr. Carlton Zdanski.
The Cumbies developed an instant rapport with their care team at the UNC Children’s Airway Center, especially David’s new ENT, Carlton Zdanski, MD.

“We call him ‘Dr. Ama-Zing,’” says Langley. “David has had more surgeries and procedures than I want to count, but every single experience at UNC has been nothing short of excellent. And it’s not just Dr. Zdanski. Every single person in that hospital does his or her job with such precision and care.”

In the fall of 2012, David’s doctors started talking about surgery once again—this time to reconstruct his airway. For the first time in his life, 2-year-old David would breathe on his own without a trach, and after some weeks of recovery, his parents would hear their son’s precious voice for the first time.

“Our original plan was to return to Boston when it came time for David to have his trach out,” says Langley, “but on October 4, 2012, there wasn’t anyone else in the world we wanted in the OR. It had to be Dr. Zdanski.”

David was hospitalized for more than three weeks following his successful surgery, but there is one day that stands out among all the others.

“We asked David, ‘What does a dog say?’” remembers Langley. “He just looked up at us and said, ‘Ruff!’”

“There were so many days I’d prayed for David to be able to utter even a single word,” adds Langley. “And now he just talks and talks and talks. We owe so much to N.C. Children’s Hospital.”

The Cumbies have channeled their gratitude into service: helping others as members of UNC Children’s Family Advisory Board and being a resource to other tracheostomy families.

This past April, they also welcomed son, Bennett, whom Langley carried to full term. When Langley noticed Bennett’s lips turn blue during feedings, she turned once again to UNC. Pediatric pulmonologist, Celia Loughlin, MD, diagnosed him with laryngomalacia, a softening of the larynx that can cause narrowing or a partial collapse of the airway during breathing. The experience was frightening, but the family already knew they were in good hands.

“Sometimes I think I've spent as much time in clinic appointments, the ED, and on the 5th floor of the Children’s Hospital than I've spent in my own home,” says Langley. “Still, I continue to be amazed at how ‘at home’ we feel when we’re there. The hospital is truly a beautiful balance of medicine, empathy, and high standards.”

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