Amila W .

From medical mysteries to UConn fan

As a toddler, Amila was an adorable bundle of medical mysteries. She battled pneumonia and frequent ear infections. She had asthma and difficulties with swallowing. “She was a sickly child,” her mother, Alisha, remembered. When Amila was nearly three, Alisha and her husband, Claude, noticed that she was no longer responding to her name or making eye contact with them. She had become very sensitive to light and textures, even to ordinary things like combing her hair. And she was uncomfortable with loud noises and large crowds, to the point of her body going rigid. 

The monthly ear infections led her pediatrician to refer them to Connecticut Children’s otolaryngologist Nicole Murray, MD. Dr. Murray is also Connecticut Children’s Director of Aerodigestive Medicine and leads a team of pediatric experts in otolaryngology, pulmonary medicine, gastroenterology, and speech pathology. It was just the type of coordinated care needed to unravel Amila’s medical mysteries. 

A rare congenital condition

It was discovered that Amila had a gap between her voice box and esophagus, a rare congenital condition known as a laryngeal cleft. This gap was causing a dangerous problem called silent aspiration in which Amila accidentally inhaled food and liquid into her airway when eating and drinking. She began a special diet that included thickened liquids and Connecticut Children’s speech pathologist Kerry Byron, MS, CCC-SLP, helped her with strategies to safely eat and drink. 

To treat Amila’s laryngeal cleft, Dr. Murray injected a special type of gel to fill the gap and later performed surgery to permanently close it. Amila’s swallowing mystery was solved. She could now safely eat and drink.

One mystery remained

None of that explained Amila’s sensitivity to light, sounds, textures, and crowds, however. Nor did it clarify why she struggled to correctly interpret social cues or explain her difficulty at times of transition or changes to her routine. When Amila was roughly three to four years old, an occupational therapist suggested that she be evaluated for autism, but waitlists for autism evaluations and Amila’s ability to mask the symptoms as she got older made for a long road to diagnosis. Last year, pediatric nurse practitioner Dana Brunell Eisenberg, APRN, in Connecticut Children’s Division of Developmental-Behavioral Pediatrics evaluated further and finally made the diagnosis official. Amila continues to see Dana to help her handle the challenges of living with autism.

Her asthma still leaves her highly susceptible to colds and other respiratory infections, so she sees Connecticut Children’s pulmonologist Jamie Harris, MD, to manage that. She no longer needs occupational therapy but participated in a social skills group through speech-language pathology last summer.