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The Cumbie kids on Christmas

From High-Risk Preemie to Boisterous Boy

Born prematurely at 26 weeks, David Cumbie was just 11 weeks old when doctors in Boston performed a tracheostomy—implanting a tube in his throat—to bypass his blocked airway. The tracheostomy allowed him to breathe, but his blocked airway kept him from being able to use his voice.

Two years later, a team of UNC Children’s Hospital specialists gave him back his natural breath—and his voice.

Cumbie twins shortly after birth at 26 weeks
David, left, and his twin sister Mary Camden.

The story begins in August 2010 while Langley Cumbie was living in Boston. She went into labor at 26 weeks and gave birth to twins: David, weighing 2 pounds, and Mary Camden, weighing 1 pound, 14 ounces.

Mary Camden suffered airway problems and would later be diagnosed with asthma, but her issues improved much more quickly than David’s, despite her smaller size.

The biggest problem was David’s airway; it was severely narrow, with an opening just 1 millimeter wide, an extreme case of what’s called subglottic stenosis. He couldn’t breathe or eat unaided. He couldn’t even cry. His doctors at Boston Children’s Hospital performed a tracheostomy, bypassing his obstructed airway through a surgical opening and placing a special breathing tube in his neck. The tracheostomy would help him breathe, but without air flowing through his narrowed airway and vocal cords, it would leave him without a voice.

Mary Camden was discharged after 99 days in the neonatal intensive care unit. David didn’t come home until almost three weeks later and was still on oxygen support. The family soon learned how to manage his complex care at home, suctioning David’s trach at all hours and changing his tube every two weeks.

“Our house was an ICU for two years,” Cumbie says. “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 family relocated to Raleigh, a move that worried Cumbie.

David sitting with his mom on a bench
David and his mom, Langley.

“I was terrified to leave all of David’s specialists, especially his ENT,” she says. (An ENT is an ear, nose and throat doctor, or an otolaryngologist.) “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-Salem, 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.”

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

“We call him Dr. Ama-Zing,” Cumbie says. “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.”

David Cumbie sitting up on a stretcher, surrounded by his care team
David became close with his medical team at UNC.

In fall 2012, David’s doctors at UNC Children’s started talking about surgery once again, this time to reconstruct his airway. For the first time, 2-year-old David would be able to breathe on his own without a trach, and his parents might finally hear their son’s voice after some weeks of recovery.

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

David was hospitalized for more than three weeks after surgery. Flash forward more than five years, and now he’s a vivacious first-grader using his voice for things like singing in the chorus and acting in plays. The 7-year-old also enjoys coloring, spending time with his twin sister and playing T-ball.

“There were so many days I’d prayed for David to be able to utter even a single word,” Cumbie says. “And now he talks up a storm and talks all the time. We owe so much to UNC Children’s Hospital. The hospital is truly a beautiful balance of medicine, empathy and high standards.”

Last year, David and his family moved to Houston, where he is treated by otolaryngologist Soham Roy, MD, a close friend of Dr. Zdanski’s. The two men consulted about David and continue to discuss his care.

“We’re in good hands and keep in touch with all our friends at UNC Children’s,” Cumbie says.


 

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