Patients in the Spotlight: Ethan LeRoy

Baby Boy Begins Eating Again Thanks to Help from Feeding Program

Ethan LeRoy was 3 months old when he started refusing food. His parents, Amanda and Luke, tried to feed him bottles but he would block his mouth with his tongue or push away the bottle.  First-time parents, the LeRoys thought Ethan’s already existing trouble with acid reflux could be a factor, but they didn’t think it would make their baby boy stop eating altogether.

Just two days before Halloween, on Oct. 29, 2013, Amanda and Luke called Ethan’s local pediatrician, Sara Dovichi, M.D., at Fairport Pediatrics, LLP, and described what was happening. Ethan was also dehydrated. Dovichi told them to go to UR Medicine’s Golisano Children’s Hospital. It was soon after they arrived that Ethan was admitted to 4.3600 and diagnosed as “failure to thrive.”

After trying a number of medications, running a variety of tests, and having different nurses try feeding him, Ethan’s medical team decided to have him try a nastrogastric (NG) tube. With the tube, nutrients would be passed through Ethan’s nose, past his throat and into his stomach.

“We were trained how to insert the tube and to check its placement before we were discharged, but being at home with Ethan by ourselves was totally different,” Amanda said. “He would squirm and pull it out and we had to make sure it was placed correctly with every feeding. It was all very overwhelming.”

At almost 5 months old Ethan still didn’t have a diagnosis and his parents were growing worried. After two weeks at home with the NG tube Amanda and Luke noticed that Ethan wasn’t keeping his milk down and would start to choke on even the smallest amounts. 

Their pediatrician ordered an X-ray and found that Ethan had fluid in his lungs. The LeRoys were sent back to Golisano Children’s Hospital for possible aspiration. Like their first Halloween, the new family also spent their first Thanksgiving at the hospital.

Pediatric Gastroenterologist Marilyn Brown, M.D., switched Ethan to a feeding pump to get a better understanding of how much food he could handle. Totals turned out to be just 1½ ounces over an hour. Usually, infants Ethan’s age could drink a bottle of 5 ounces of fluid in 10 minutes, ingesting close to 30 ounces a day.

Throughout his time at the children’s hospital, Ethan saw more than 20 different care providers, including pediatric ear, nose, and throat specialist Margo McKenna Benoit, M.D. Benoit performed an endoscopy on Ethan to see what was causing him to choke and found he had a laryngeal cleft, a gap between his larynx and esophagus that allows fluid to spill into the lungs. The rare congenital abnormality could close over time, but if it doesn’t, Ethan will need surgery.

Finding an explanation for Ethan’s choking was reassuring for the LeRoys, and but his medical issues didn’t end there.

Some of Ethan’s many other medical appointments included visits with a physical therapist, occupational therapist, and speech therapist. During one of his physical therapy appointments his therapist noticed a hump on Ethan’s back. An x-ray and examination by pediatric orthopedist James Sanders, M.D., discovered the resilient young boy had a displaced and malformed vertebra in his spine. Ethan needed to wear a back brace to help correct it.

Because of Ethan’s health issues, he spent more time on his back than babies usually do, causing his head to deform slightly. Ethan would be referred to Charles Robinson, an Orthotics and Prosthetics physician at Clinton Crossings.  He made a helmet just for Ethan to help his head grow properly.  

All of Ethan’s medical issues and treatments added together — a continuous feeding pump though his NG tube, acid reflux, helmet, and back brace — made it very difficult for Ethan and his parents to sleep.

“We wouldn’t sleep because we were always worrying if he was okay,” said Amanda. “It was a 24-hour job.”

It was now December and Ethan was still having trouble eating. Thanks to a referral from the Speech Pathology Department at Strong, the Kirch Developmental Services Center’s Kimberly Brown, Ph.D., a pediatric psychologist with a specialty in feeding disorders, helped the LeRoys find relief. As part of the Division of Neurodevelopmental and Behavioral Pediatrics, Brown usually didn’t take patients until they were at least 1 year old, but she heard Ethan’s rare and complicated case and knew she had to help him, and his parents.

Ethan started seeing Brown twice a week and, little by little, he started eating. Brown decided that the techniques to be used with Ethan needed to be predictable, fun, and had to end on a positive note. They also needed to provide the family with support through this challenging experience. During his first few months with Brown, Ethan started tasting baby food and took his first sips from a bottle.

“When he had his first sips we threw a party!” Brown said. “It seems like something so small, but it was progress.”

At 9 months old Ethan still wasn’t eating full meals or keeping up on fluids. His medical team believed it would be best to replace his NG tube with a gastrostomy tube (G-tube), which, inserted through the abdomen, allows fluids to be delivered directly to his stomach. The procedure, performed in March by former Golisano Children’s Hospital surgeon Yi-Horng Lee, M.D., required Ethan to be admitted for three days.

“We were so scared,” said Amanda. “This would be Ethan’s third time going under anesthesia, but we decided it was the right thing to do. It turned out to be one of the best things we did.”

The day after his surgery Brown was visiting the family in the hospital room and Luke asked if Ethan could try the bacon they had left over from breakfast. Ethan’s reaction to the taste – trying to put more of it in his mouth and grabbing it from Brown – proved that changing to a G-tube was the right decision.

“The NG tube was really impeding Ethan’s progress,” Brown said. “Once we switched to the G-tube and he had the tubes out of his nose, he was eager to eat. Watching him react to the bacon the way he did was such a highlight.”

While still using the G-tube for fluids, Ethan started eating waffles, spaghetti and meatballs, cereal, and more. Because of Ethan’s growth, visits with Brown dropped to once a month.

Ethan celebrated his first birthday in June 2014, when he devoured his first cupcake. The LeRoys invited Brown to be a part of the special day and, after spending months working with Ethan through all of his complications, seeing him enjoy his birthday treat was miraculous.

“Ethan’s story is certainly the highlight of my career,” said Brown. “Ethan was the catalyst for growing the feeding program and allowing it to become more comprehensive. He made us see the bigger picture, what we could become.”

The Kirch Services Center’s feeding program is made up of Brown, clinical nutrition specialist Brianne Schmidt, R.D., nurse practitioner and director of clinical services Lynn Cole, N.P., speech therapist Katherine Maruska, CCC-SLP  and, Angela Huss, LCSW, and now, thanks to Ethan’s case, a number of other consultants from related departments. Kirch continues to grow and is recognized as the only clinic to offer ongoing feeding therapy, directed by a psychologist, in Western New York.

Ethan is now tube- and helmet-free. Due to his progress, Ethan’s G-tube was removed in September, three months sooner than expected. He still has to wear his back brace and doesn’t drink as much as toddlers should, but his parents and medical team know what to watch for and are extremely happy with how far he has come.

“Looking back on Ethan’s journey brings up a lot of memories,” Amanda said. “We had no idea how long it’d last, but we wouldn’t be where we are today without the Kirch team and the phenomenal feeding program. Seeing how happy Dr. Brown was when Ethan ate his first cupcake showed us how much his progress meant to her and that meant the world to us. We have developed lifelong friends with the team at Kirch.

“The level of appreciation that we now have cannot be put into words.  Ethan gives us hope and strength,” Amanda said. “He is the strongest little boy we know.  He is simply our hero.”