A Breath of Fresh Air
July 12, 2018
At only age 2, Ixavier Pratt has visited the emergency room (ER) more times than many adults will in their lifetimes. His problems started when he was 3 months old. “Every month, he’d end up in the hospital for a few days because he’d get pneumonia or RSV,” says his dad, Itwan Pratt.
Finally, when Ixavier was age 7 months, his parents became concerned that he was getting sick so frequently and they still didn’t have any answers. He also had other symptoms, such as wheezing, choking while eating and constipation. So the next time Ixavier got sick, his parents decided to take him to University Hospitals Rainbow Babies & Children’s Hospital.
“From the moment we went through the ER, we could tell we were in good hands,” says his mom, Danielle Pettus. In the ER, a pulmonologist who treated Ixavier referred them to UH Rainbow Babies & Children’s Aerodigestive Clinic. Through this program, experts from a variety of pediatric specialties take a collaborative approach to treating children with chronic and complex airway, breathing and swallowing conditions.
“The bodily structures involved in feeding and breathing are very closely related,” says Ramy Sabe, MD, a pediatric gastroenterologist on the Aerodigestive team at UH Rainbow Babies & Children’s Hospital. “An abnormality with one can cause problems with the other.”
During Ixavier’s first appointment, he met with all the pediatric providers who would be involved in his care, including a pulmonologist, a gastroenterologist, an otolaryngologist, a surgeon, a social worker, a dietitian, a speech therapist and an occupational therapist.
“Patients see every specialist during their visits,” says Christen Conard, CNP, Aerodigestive Clinic Nurse Navigator. “This way, they get the benefit of a multidisciplinary, coordinated team approach. It’s also more convenient for families because they don’t have to make separate appointments with each of the providers.”
Together, the team decided that in order to find out what was causing Ixavier’s frequent illnesses and symptoms, they would need to perform a variety of diagnostic tests that were all coordinated simultaneously under one anesthesia session. “The entire team was present in the operating room so we could perform the necessary tests and collaborate along the way,” Dr. Sabe says.
Based on the findings, Ixavier was diagnosed with a variety of conditions, including reactive airway disease, laryngomalacia (floppy opening to the airway), tracheobronchomalacia (floppy airway), bacterial bronchitis, laryngeal cleft (a gap between the food pipe and windpipe), esophageal candida (a fungal infection in the esophagus) and gastroesophageal reflux disease (acid reflux).
“One of the reasons he was getting sick so frequently was because liquids were getting into his airway when he swallowed drinks and his own saliva, making him susceptible to infections,” Dr. Sabe says.
Peace of Mind
In the year and a half since Ixavier became a patient at the Rainbow Aerodigestive Clinic, he has received a variety of treatments, including medications to treat different infections, ear tubes to prevent ear infections, and a procedure in which a medication was injected to bulk up the tissue between his food pipe and windpipe to help with his laryngeal cleft.
“Once we had the diagnoses, it was a big relief,” Itwan says. “For the first couple months of Ixavier’s life, we were wondering, ‘What’s wrong with my baby? Why is he always sick?’ We were relieved to finally know what the problems were and that the team had a plan for treating him. It eased our anxiety.”
Today, Ixavier visits the Aerodigestive Clinic every four to eight weeks. Since his treatments, his eating and energy have drastically improved and he is sick much less frequently.
“The Aerodigestive team has given me so much peace of mind,” Danielle says. “All of the doctors are always on the same page, and I know they have his best interest in mind. Anytime I have a question, I contact Christen and I know she’ll get us all the answers we need. As a parent, there’s nothing more reassuring than that.”
To learn more about the Aerodigestive Clinic at UH Rainbow Babies & Children’s Hospital, call 216-844-1094.