Maddie: Down Syndrome and Complex Airway Care

Kim used to drive her daughter Maddie down to Denver about once every three weeks — a 540 mile round trip. There was no other option.

Maddie was born with a tracheoesophageal fistula (TEF) and esophageal atresia (EA). The fistula and atresia were repaired in the first week of her life, but she continued to experience problems throughout childhood. By age 3, Maddie’s issues with breathing and swallowing were becoming unmanageable. At the time, there weren’t pediatric doctors in Casper, Wyoming who could manage her needs.

"We were literally driving to Denver in the middle of the night with Maddie having something stuck in the back of her throat, just to get it surgically removed," Kim says.

Discovering the Sie Center for Down Syndrome

In addition to the TEF/EA, Maddie has Down syndrome, and the specialists she was seeing at an adult hospital in Denver saw her frequent emergencies as a foregone conclusion: That was just the way it was.

That's when Kim heard about the Sie Center for Down Syndrome at Children’s Hospital Colorado. “I was like, ‘Wait a minute. We need to be there,” she says.

Kim scheduled an appointment at the Sie Center Maddie just weeks later. When Kim told the team about Maddie’s continued struggles with TEF/EA, doctors also referred her to Children’s Colorado’s Aerodigestive Program, which coordinates otolaryngologists, gastroenterologists, pulmonologists and others to provide comprehensive care for children with complex issues like Maddie’s.

Working with the Aerodigestive Program

“In patients with a history of TEF and EA, the airway and esophagus remain abnormal in shape and function after repair,” says pediatric otolaryngologist Jeremy D. Prager, MD.“Patients have tracheomalacia, or floppiness of the airway, which impedes clearance of secretions and can cause significant breathing difficulties. In addition, abnormal esophageal movement leads to ongoing swallowing issues.”

Compounding that difficulty was Maddie’s Down syndrome diagnosis. The condition increases the risk for infection, decreased muscle tone, compromised airway anatomy, and enlarged adenoids and tonsils. This meant Maddie was often unable to clear mucus from her airway, causing frequent bouts of pneumonia. Airway obstruction also caused Maddie to have severe sleep apnea.

“Before, Maddie probably missed at least a week every month of school,” Kim says. “She was always getting sick, getting infections and not being able to function because she’d sleep so much. She would sleep literally 15 hours a day.”

Addressing those interrelated issues required a truly multidisciplinary approach. Maddie worked with nutritionists, pulmonologists, otolaryngologists, feeding specialists, occupational therapists and many others to develop a regular, preventative treatment routine her family could accomplish at home.

Tracheopexy, treatment and gaining freedom

The team first decided to work on clearing mucus and opening Maddie’sairway.  Her doctors implemented an antibiotic regimen, hypertonic saline, a C-PAP machine for nighttime and a couple of daily treatments in a vibrating vest, much like the ones cystic fibrosis patients use.

This plan made a significant impact. It effectively ended Maddie’s midnight runs to the ER, and it opened a whole world of possibility. Maddie started swimming, dancing, climbing and riding horses. She ran track and started to participate in the Special Olympics. Maddie’s family also went on their first family vacation to San Diego.  

“She was on a lot of meds and still having quite a bit of trouble,” says pediatric pulmonologist Emily DeBoer, MD, Medical Director of the Aerodigestive Program. “And her tracheomalacia was still really limiting her in a lot of the activities she wanted to do. All that made her a good candidate for the tracheopexy.”

A tracheopexy involves attaching the back of the trachea to ligaments of the spine using sutures. This essentially holds the trachea open. It’s performed at just a few centers around the world —and Children's Colorado is one of them. That was the proecedure that opened up the door to more freedom for Maddie's future.

Going for gold

Now, almost a decade later, Maddie is living life to the fullest.  She particularly loves hanging out with her friends in high school. She’s also a fierce competitor. In 2026, she traveled to Minnesota for the 2026 Special Olympics USA Games, where she earned  four powerlifting medals — including two gold medals.  She also showcased just how independent she has become.  

“It was really fun to see her be so mature and stay for 10 days without mom or dad or a respite worker,” Kim says. “It was just her and her team, and she had to rise up. It was really cool to see everything that we've done from the very beginning to that point of her being independent. And at 17, that was a huge deal.”

Maddie also swims in the Special Olympics as well as for her high school team.  She competes in downhill skiing (something she has done since she was 8 years old), basketball and soccer, as well.

For Maddie and her family, Children’s Colorado will always be a special part of thejourney, woven into all the stages of her life. Most recently, Maddie has proactively connected with the Sie Center's Down syndrome experts to make sure she is doing everything she can to stay on top of her care as she moves into adulthood.

“She loves going to Children’s Colorado,” Kim says. “Those are her doctors. That’s her place. And she absolutely feels welcome. It’s never sad to go to Children’s Colorado; it’s happy. She knows she’s going to be taken care of, and she knows that she’s going to be listened to.”