by Jessica Pasley
It takes a village.
While a common idiom, Erin Harrison understood the depth of the African proverb at its core.
Determined to ensure that her son, Alex, had the best chance to survive and thrive, Harrison knew she needed the right team to support her efforts.
Luckily for her, the Complex Aerodigestive Evaluation Team (CADET) at Monroe Carell Jr. Children’s Hospital at Vanderbilt was at the ready.
The clinic is a multidisciplinary and collaborative group focused on complex airway and upper digestive issues for chronically ill children. Teams of specialists work together to evaluate and care for patients with complex airway, pulmonary, upper digestive, sleep and feeding disorders, all in one place.
It was just the network of support that Harrison and her husband, Mark, needed to move forward with their goal for Alex, 6.
Started in 2008, CADET is the result of a national movement seeking the best outcomes for interventions in pediatric airway surgeries. Christopher Wootten, MD, associate professor of Otolaryngology – Head and Neck Surgery, and other Children’s Hospital specialists in Gastroenterology (GI) and Ear Nose and Throat (ENT) had a common objective to create a clinical space and network for this patient population.
The clinic has seen major growth over the past five years and is more surgical-based for airway reconstruction. It is now the largest center in the region, accepting more complex referrals and seeing patients from as far away as Rhode Island and Florida.
“We offer the highest level of coordinated care,” said Wootten, one of the founders of the clinic. “Any one of the conditions treated in our clinic is rare, but we are unified in the way we approach them.
“We recognized that the best outcomes were gained when the anatomy and physiology of the patient is optimized,” said Wootten. “Our patient families absolutely love this model of care.
“Oftentimes, families share that what we are providing is exactly what they have been looking for — people working together, communicating, explaining things as a group. We are the voice of many providers working together in a contemporary model.”
In 2019, Mark and Erin Harrison were offered the chance to become foster parents to Alex, then 4. The pair spent 10 days at Children’s Hospital learning to care for him. When he came into their household, it was his final stop on a long foster care journey.
Born at 27 weeks gestation, Alex required around-the-clock care for a host of medical issues including seizure disorders, asthma and cerebral palsy. He was trach- and ventilator-dependent and required gastrostomy tube (G-tube) feedings.
“We knew we were called to take care of him,” said Erin, who with her husband has five adult children. “We knew God would equip us. Alex needed someone to help him. I’m a fighter and I was all in.”
In 2020 the Harrisons adopted Alex.
Since joining their family, Alex’s progress has been nothing short of a miracle.
“The first week we came to clinic, I had a list,” recalled Erin with a chuckle. “I wanted his trach out, wanted him to have hip surgery, to get off most of the medications … I told them that he will eat and he will walk.
“I could see it in his eyes — there was so much more to him than he was given credit for, and that he wanted to express, but couldn’t. He didn’t have a voice, but with the help of the CADET team, now he does. And with their continued help, he will be able to tell his story.”
Harrison said part of what makes CADET successful is the team’s desire to ensure children are reaching their highest potential.
Elizabeth Vaughn, RN, MSN, the patient care coordinator for the clinic, said many parents were unaware of the clinic’s multidisciplinary and collaborative approach to coordinated care.
“We are here to help them navigate the system,” said Vaughn. “Families need others to be invested in keeping their child’s care on track. They need someone to help fit all the pieces of the puzzle together. We do that.”
Erin is thankful for the team’s expertise.
“They have worked with me. They listen to me. They trust in me to help Alex move further along his journey. We are all a part of the team seeking to improve Alex’s life.”
Today Erin is proud to check off the items from her initial clinic list. Alex takes one medication, down from 15. In 2020 he had hip surgery and began using a walker a year later. Airway reconstruction followed in 2020 allowing for oral feeding, talking and breathing without the trach or the ventilator. No seizure activity is detected.
In addition to ENT, pulmonary and GI, the clinic also provides a speech, feeding and nutrition component.
“The clinic is all about the intersection of the airway with the digestive system,” said Sari Acra, MD, professor of Clinical Pediatrics and director of the Division of Pediatric Gastroenterology. “Many diseases that affect the airway and the upper digestive system often affect both. We are able to ensure that everyone is on the same page, getting the same information, at the same time.”
By offering a coordinated clinic, patient management is streamlined. What would take nearly six months or more of clinic visits, occurs in one setting.
“The providers come up with one unified conclusion,” said Acra. “We feed off of each other, which makes the diagnostic process quicker, but also the eventual intervention is more synchronized. We do it all together.”
The future of the CADET model is twofold, said Wootten, who hosts an annual national meeting on aerodigestive disease and care in children. He said the hospital’s influence on the national landscape continues to grow.
“We have been working with eight centers on a research collaborative to create a database for aerodigestive disease. I’d love to see us serve as the data hub for that information,” he said.
“I’d also like us to elevate our aerodigestive program to the national consumer and become a destination program with international reach.”
Acra agrees with advancing the clinical platform, and said research is key to raising the bar on clinical advancements.
Alex’s case is exceptional and a solid example of coordinated care.
“I could not have done all of this without CADET,” said Erin. “They changed our lives forever. This has given him an opportunity to have a normal life, and we couldn’t be more grateful.”
