Cameron’s Type 1 Cleft Journey
Delaware
by Felicia Quinn
When Cameron was born in 2022, we noticed his breathing was off. He would often have pauses in his breathing, grunt and sound squeaky. At six months old, he gagged and choked while eating purees. During one episode, he turned blue and almost stopped breathing.
The summer of 2023, he had breathing issues after choking on a piece of a rice rusk made for toddlers. This prompted me to seek advice from a local pulmonologist near where we live in Delaware. After a functional endoscopic evaluation of swallowing (FEES) test, we were told he had very mild laryngomalacia and did not need to do anything different.
As time went on, we had to do modified feeds for solid foods. Cameron worked with a speech therapist, who told us for months that fluids were not an issue and to just keep trying. As each month passed, our son would go into distress, having visible retractions when breathing. He sounded like he needed to clear his throat and constantly had a hoarse-sounding cough.
For over a year I told everyone something wasn’t right with his breathing and eating. Common colds and viruses resulted in ambulance trips and emergency room visits. In October 2023, he had a modified barium swallow study (MBSS) which felt very rushed. I begged and pleaded with the first hospital system to listen to me, but did not get answers. I had made it a point to take videos that captured my son’s breathing and the sounds he had made since he was born. I was persistent. We tried to do what they recommended, but it wasn’t working.
We then switched to Children’s Hospital of Philadelphia (CHOP) after a hospital admission, because Cameron did not want to drink fluids. I made an appointment for Cameron to see the airway team. A new MBSS study in January 2024 showed laryngeal penetration on all consistencies. We met with the GI physician the following day. I explained to the doctor that I felt Cameron was uncomfortable drinking and something was wrong. We started adding thickeners to his fluids. Cameron showed little to no improvement, barely maintaining his weight. The doctor agreed to do an endoscopy. Cameron was already scheduled for an airway scope at a different hospital, so I pleaded with CHOP to combine the two procedures.
In March 2024, Cameron had a triple scope at CHOP. After 19 months of searching, we had an answer. Cameron was diagnosed with a type 1 laryngeal cleft and severe laryngomalacia. These diagnoses, along with his small jaw, contribute to all of his respiratory distress and feeding issues.
Currently, Cameron has an NG tube. He will most likely need a G-tube to improve his nutrition and fluid intake, decrease frequent illness, and help get him stabilized. A laryngeal cleft stitch repair will happen sometime in the future. I share his story to bring awareness and hope for change and education for providers.