As they waited for their son Jack’s appointment, Marika and Josh Reuling had no indication that July 17, 2018, would be different from any other day. They chatted, glanced at the cartoons playing in the waiting room and handed Jack crayon after crayon as he happily colored a picture. It seemed like a just another routine check-up with Dr. Rachel Rosen, director of the Aerodigestive Center at Boston Children’s Hospital.

But once the Reulings were settled in an exam room and Jack had sampled a variety of foods as part of an evaluation with feeding specialist Kara Larson, Rosen had a surprise for them. “What do you think about taking out Jack’s G-tube today?” she asked. …