Thriving Beyond a Swallowing Disorder: Amila’s Story

At 6, Amila is stronger than ever and continues to thrive thanks to her Connecticut Children’s care team

Like many medical stories, Amila Watt’s begins with a mystery. 

For the first few years of her life, she struggled with one illness after another — usually, infections in her lungs or ears. Ear tube surgeries stopped the ear infections, but the respiratory illnesses kept coming. Parents Alisha and Claude agonized as their daughter suffered through one infection after another. 

That wasn’t the only mystery. There was also Amila’s breathing, which seemed too noisy, even when she wasn’t sick. There was the way her voice sounded different after eating or drinking. Amila has asthma, which made all of this more concerning — but didn’t explain any of it. 

By the time she was a toddler, Amila’s medical record was longer than most adults’. And it was filled with more questions than answers. 

Then she met Connecticut Children’s aerodigestive team.

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Pediatric ear, nose and throat expertise in complicated conditions

The ears, nose and throat are connected in complicated ways — which means solving a problem that starts in one area can require specialists from all of them. For patients like Amila, that’s where Connecticut Children’s aerodigestive team comes in.

The team, led by Nicole Murray, MD, is made up of pediatric experts in otolaryngology, pulmonary medicine, gastroenterology, and speech pathology. They work closely with each other, and with every other specialty a child sees at Connecticut Children’s.

“Dr. Murray and her team were phenomenal,” says Claude. “Because of them, we were able to find out why Amila was having issues and get the services she needed.”

After tests like bronchoscopies and swallow studies, this team discovered that Amila had been dealing with some very complex — but hard to detect — swallowing problems.

That included a swallowing disorder called dysphagia. It also included a gap between her voice box and esophagus, a rare congenital condition known as a laryngeal cleft. As a result, Amila had a dangerous problem called “silent aspiration.”

Amila with Connecticut Children’s Dr. Nicole Murray of the Aerodigestive Team
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“It’s been great having all of Amila’s providers on one system, communicating with each other, working together toward a common goal. They’re always consulting with each other, and keeping us in the loop. That’s made everything so much easier on us.”

Alisha, Amila's mom

What is silent aspiration in kids?

Silent aspiration is when you accidentally inhale food or drink into the airway due to the natural cough reflex not working properly. It is called silent because it’s not always obvious when fluid or food enter the trachea (airway) or lungs.

This was frightening news for Amila’s parents to take in. The good news was that their daughter was connected to the help she needed.

“Other families should know they can trust Connecticut Children’s. They have a great team,” says Alisha. “Without that interdisciplinary approach, I don’t think we’d be where we are today with Amila.”

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Pediatric feeding specialists and speech pathologists close to home

Amila got started on a special diet, and began meeting with feeding specialists like speech pathologist Kerri Byron, MS, CCC-SLP. At these visits, she learned strategies to safely eat and drink — visits that, to her, feel more like playdates…

Amila with Connecticut Children’s speech and feeding specialist, Kerri Byron

“Amila sees it as a fun experience. Connecticut Children’s makes it positive for her,” says Alisha. Plus, “Kerri’s known her since she was little. That continuity of care is amazing.”

All of this is coordinated with Amila’s asthma doctor at Connecticut Children’s, Anne V. McLaughlin, MD; her school; and her primary care team at Manchester Pediatric Associates, part of Connecticut Children’s Care Network.

Meanwhile, Dr. Murray has performed two surgeries to treat Amila’s laryngeal cleft. First, she injected a special type of gel to fill the gap. Then, last summer, she performed a permanent closure. With that surgery, Amila’s mysterious health issues have all but stopped.

After years of visits, tests and surgeries, she is finally feeling as awesome as she is.

“We’re so proud of Amila,” says dad Claude. “She’s been through a lot the past couple years. She’s an inspiration.”

An ending Beyond Imagination 

At 6 years old, Amila’s long medical record is finally starting to taper off.

She continues to see Dr. McLaughlin for asthma. But with her swallowing mystery solved, she’s “graduated” from care with Dr. Murray. She no longer gets frequent lung infections. She can have liquids that haven’t been specially thickened. She still has to take her time when she eats and drinks, but mealtime is no longer a scary experience. It’s just mealtime.

She’s thriving in other ways too. At home, she cheerfully fusses over her 4-year-old sister and 16-year-old brother. At school in the first grade, she’s funny and animated; opinionated and bright.

Amila with her mom, Alisha and dad, Claude
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“It’s a major success story,” says Alisha. “When I think of Beyond Imagination, I think of Amila being able to enjoy food again.”

Perhaps most of all, she’s resilient.

Her parents chalk it up to the many health challenges she’s overcome. They have a feeling it could play a role in her future too.

“A child going through all of those surgeries and procedures, and being able to bounce back, is an inspiration,” says Alisha. “When I think about Amila’s future, I see someone who may be able to support and help others who are going through the same thing.”

“Amila has had a long road,” agrees Dr. Murray. “But today, thanks to great teamwork and her awesome family, she is thriving Beyond Imagination. And I know her future will be bright beyond imagination too.”