Violet’s Type 1 Cleft Journey
By Laura Partin
Violet was born with a collapsed lung and she was bubbling at the mouth. After she healed from the collapsed lung, Violet’s breathing still sounded wet. In addition, she was not latching onto the breast or bottle well. To feed her, we had to use a preemie nipple and started putting rice cereal in her bottles.
Violet started feeding therapy before the age of one. They did a swallow study which showed silent aspiration. We were told to thicken her formula, something we already were doing.
My daughter also had a lot of food allergies and required an epipen twice before her 2nd birthday. With all of this going on, eosinophilic esophagitis (EoE) was suspected. She had an endoscopy done and the results came back negative for EoE. During all of this, Violet had a lot of major behavioral issues. Feeding therapy referred us to occupational therapy (OT), then to neurology, and she was eventually diagnosed with high functioning autism.
A year went by without any change in health or her chronic cough. Violet had another swallow study done, and she passed. We were told she could go off thickeners, but she never really did because she needed thickened formula for the extra calories. She had lost so much weight that when she was thirsty, we almost always gave her formula for the calories.
The doctor was so convinced it was EoE that they did another endoscopy. It came back negative a second time. We continued in feeding therapy and Violet still functioned mostly on formula mixed with rice cereal and peanut flour. We were packing it full of calories because she spit out most solid foods. Due to Violet passing the swallow study, the doctors at this point thought her refusal of most solid foods was more sensory related.
Around the age of 4, she fully made the transition off formula, but she was choking a lot and feeding was so stressful. Violet also kept getting sick all the time. We did another swallow study and it showed a little bit of penetration. They put her back on thickener. It took about 3 years before the aerodigestive team did a triple scope. Violet was then diagnosed with a type 1 laryngeal cleft at age 7. About 4 months later, in April 2024, she had the stitch repair.
Violet is still on thickener. She had aspiration pneumonia again post-surgery and still has a cough. Every time Violet is needing antibiotics, the doctors want an x-ray to see how her lungs are doing. It’s been frustrating. Because she had passed the swallow study following surgery, aerodigestive wanted us to do an impedance probe to check for reflux. It was extremely frustrating because we had previously been told that reflux was ruled out.
We declined the impedance probe, as we didn’t feel it was necessary. Instead, we agreed to try omeprazole for a month to see if we noticed improvement. We did not see improvement, and aerodigestive again agreed it was not reflux. We have been trying to get her medical team to go back in and check the cleft repair. They say they will after the winter as they first want to see how she does over the next few months.
We also feel like something else is going on with Violet and we haven’t been able to figure it out yet. She is having what looks like seizures, but only in her sleep. She can go weeks to a few months without an episode, and then she may have 2 or 3 in one week. She’s had multiple EEG’s but they’ve not caught anything yet.