Aubriana's Laryngeal Cleft Story

Massachusetts, USA  |  April 2025

By Melissa Alves

Aubriana was born on February 20, 2021, and was a healthy 8-pound 6-ounce baby. In her first few days of life, we noticed she struggled to take bottles. Doctors assured us babies can be tricky, and she was simply not used to it yet. We tried different brands of bottles, but the struggling and vomiting continued. The pediatrician thought maybe Aubriana had a milk protein allergy and advised us to try a few different formulas. The vomiting and congestion got worse and she slowly stopped taking bottles. 

We saw a GI physician who said she was just allergic to milk and soy and recommended Puramino formula. This same physician also told us we didn’t have to use Dr. Brown bottles because they could be pricey. Those words upset me because I didn’t care how much money we spent as long as my baby could eat and be OK! 

We sought a second opinion at a children’s hospital in Massachusetts. We met with the aerodigestive team when Aubriana was 3 months old. They immediately hospitalized her for failure to thrive and inserted an NG feeding tube. At this point, the doctors had no clue as to why Aubriana wasn’t taking any bottles. 

We also met with doctors specializing in airway disorders. An ENT did an in-office scope. Everything looked OK except for a lot of reflux/GERD. Next we attempted two swallow studies, but both were unsuccessful because Aubriana wouldn’t take a bottle. X-rays and ultrasounds did not explain why my daughter would not drink from a bottle. 

In September of 2021, Aubriana was scheduled for a G-tube placement and a triple scope. Doctors hoped to find answers as to why she was always congested, silently aspirating, and needing to be hospitalized for bronchitis. The ENT and her pulmonologist came out and told us that Aubriana had a type 1 laryngeal cleft and her left lung was collapsing!

Aubriana underwent her first cleft stitch repair in September of 2022. She was on thickened liquids until the spring when we began to wean her off. She seemed to be doing great but a few weeks later she started to show the same signs again of coughing, congestion, and silently aspirating. Her ENT ordered another swallow study in hopes that she would drink liquids during the test, but once again she refused. Another bronchoscopy was scheduled and sure enough, the laryngeal cleft needed to be repaired again.

A year after her first cleft surgery, Aubriana was doing well on honey thickened liquids and eating foods. She had her G-tube removed in October of 2023. In December of 2023, Aubriana was diagnosed with autism and a sleep disorder. 

While waiting for the second repair procedure in January of 2024, we worked on her oral feeds with the feeding team and OT through early intervention. After her second stitch repair, Aubriana weaned off thickened liquids in May of 2024. Since then she has been THRIVING! 

Her ENT and aerodigestive team are all amazing. I consistently sat in the hospital for days and weeks on end, advocating for her day in and day out. I'm glad she has her team of specialists. They always listened to me and always did what was best for Aubriana!