Finding Success and Overcoming Fears Through the Pediatric Feeding Program

At his cousin’s party, Gustavo Franca, 9, sat at the table, ready to take a big step. Fork in hand, Gustavo took a bite of food, chewed and swallowed it, all without being prompted by his mother. Since he was a baby, Gustavo received food through a feeding tube in his stomach and was unable to eat anything by mouth until April 2015.

 

Gustavo was born six weeks premature with esophageal atresia, a birth defect in which the esophagus (swallowing tube) doesn’t connect to the stomach, and a tracheal fistula, an abnormal connection between the esophagus and trachea (windpipe). He had his first of many surgeries at just two days old to repair the birth defects.

To allow his body to heal from surgery and receive the nutrition he needed, Gustavo had a feeding tube placed in his stomach. At 8 months old, his mother, Glenda, of Medford, Mass., transferred his care to Mass General for Children (MGfC). At the age of 8, Gustavo was cleared to eat solids and sent to the MGfC Feeding Team and Lauren Fiechtner, MD, director of nutrition in Pediatric Gastroenterology and Nutrition at MGfC.

“Gustavo has a complex medical history and he wasn’t able to eat anything by mouth until the spring of 2015,” said Fiechtner. “He’s a delight who fills the room with his smile and laughter. It’s an honor to be part of Gustavo’s care and to see how proud he is of his successes. His resilience is astonishing.”

Since working with the MGfC Feeding Team, Gustavo has been making strides in learning how to chew and swallow and working closely with Christine Cooper-Vince, PhD, a postdoctoral Psychology fellow in Child and Adolescent Psychiatry at MGfC. Through feeding therapy with Cooper-Vince, Gustavo has been practicing chewing and swallowing new foods one bite at a time and working his way toward trying more new foods and larger bites.

“The practices that Gustavo works on are designed to help him strengthen his chewing and swallowing skills while also building his confidence in his ability to safely eat new foods by mouth. They are also designed to help reduce the fear of choking. We do this by repeatedly practicing chewing and swallowing a food until the fear has decreased before trying progressively more difficult foods,” said Cooper-Vince. “Gustavo brings an energy and enthusiasm to his feeding therapy that is contagious. When he successfully chews and swallows a new food, the room erupts into cheers and he is sure to give everyone a celebratory high-five. It’s such a privilege to work with Gustavo and his family to help him achieve his feeding goals.”

When Gustavo received the all clear to try solid foods, the first food he wanted to try was an Oreo®. “The first time I tried was hard, but Oreos are really good!” he said. Other things he likes are Popsicles® and water.

“Lots of water! I love water,” said Gustavo.

For now, Gustavo still receives food through his feeding tube as he develops his eating skills. “He’s getting better every day,” said Glenda. “He is learning how to move food from one side of his mouth to the other, but he is open to trying many new foods. Dr. Fiechtner and the Feeding Team have helped him in so many ways.”