With his lips dotted with syrup, Ethan Putnam, 5, enjoyed one of Disney’s most famous delicacies – a Mickey waffle. His mother, Laura, reached for her camera to capture the moment. Munching on a waffle was a big deal for Ethan, who spent the first few years of his life eating mostly from a feeding tube.
In 2014, at her 18-week ultrasound, Laura and her husband, Dave, found out their son had intrauterine growth restriction (IUGR), a condition in which babies do not grow to a normal weight during pregnancy. Doctors weren’t sure whether Ethan would survive. Several weeks later, Laura, of Middleton, Mass., developed severe pre-eclampsia and Ethan was born via an emergency C-section. He arrived at 27 weeks and six days gestation, weighing a mere 1 pound 4 ounces.
For the first 4.5 months of his life, Ethan stayed in the Neonatal Intensive Care Unit (NICU) at Mass General for Children (MGfC), as many premature babies do. Initially, he could breathe on his own, but was intubated a few days after birth so his underdeveloped lungs could rest and grow. Ethan was intubated for six weeks before graduating to breathing with CPAP (breathing mask) and eventually, he required only an oxygen mask.
Since he was now on minimal breathing support, Ethan was ready for his first bottle feed after being fed through a NG (nasogastric) tube since birth. Initially, feedings went well, but Ethan quickly developed severe GERD (acid reflux) and struggled to keep feeds down. He also tired easily during feeding, due to his underdeveloped lungs, and could not finish a bottle. Ethan’s parents worked closely with the MGfC Pediatric Speech, Language and Swallowing Disorders team to learn strategies on how to feed him safely. They supported their baby as Ethan made slow and steady gains and learned to suck and swallow with a bottle.
In partnership with Laura and Dave, the care team at MGfC decided a gastrostomy tube (G-tube), a feeding tube surgically placed in the stomach, was the best way to get nourishment into Ethan’s belly. During the surgery, a procedure to reinforce the function of the connection between the stomach and esophagus, called a Nissen fundoplication, was also performed. This would help treat Ethan’s GERD and prevent aspiration pneumonia (a lung infection caused by breathing the stomach contents into the lungs).
Following the surgery, Ethan had a very difficult recovery. The MGfC team eventually discovered that Ethan had an atrial septal defect (ASD), or a hole in the wall that separates the two upper chambers of the heart. This led to pulmonary hypertension (high blood pressure in the lungs). Ethan was sedated, allowing his body to heal from surgery. Several days later, he turned the corner.
The care team taught Laura and Dave how to use Ethan’s G-tube. At feeding time, they first offered him the bottle. Whatever he didn’t finish, they fed him through the tube. As a result of the Nissen fundoplication, Ethan finally stopped vomiting. However, he still struggled with retching, or gagging, at times. The retching worsened when he switched to a toddler formula at 1 year old. The continued retching eventually led Ethan to develop an oral aversion.
“Ethan would put toys in his mouth, but not food,” said Laura. “He was one of the first children to see the Pediatric Feeding Team, and they recommended weekly feeding therapy, which made all the difference.”
Over the course of the next year, through weekly feeding therapy with a speech and language pathologist, Ethan slowly learned to trust food and developed the oral motor skills he needed to eat by mouth. Throughout every visit to the Pediatric Feeding Team, the team and Ethan’s parents spotted signs of progress, especially when he transitioned from traditional formula tube feeds to blenderized tube feeds, in which whole foods, like fruits, vegetables, proteins and fats, are blended with liquid and pushed through the feeding tube.
“Laura and Dave were so patient with Ethan, and it was a good reminder for us as providers to be patient too,” said Lauren Fiechtner, MD, MPH, director of the Center for Pediatric Nutrition at MGfC. “Ethan was one of our first challenging patients because of his complex medical history, but he pulled through. At every appointment, we saw him improve, no matter how small it may have seemed.”
When Ethan began seeing the Pediatric Feeding Team, he was completely reliant on his feeding tube and received four tube feeds a day. Since attending weekly feeding therapy now closer to home, Ethan now receives just two tube feeds a day and eats the rest of his food by mouth.
“Initially, we took away the lunch time tube feed. When he was able to make up those calories eating by mouth, we removed the late afternoon feed, which was also successful. Now he receives a small tube feed in the morning and a larger one at night,” said Laura. “When we took away those two feeds, it was lifechanging. It gave us so much more flexibility during the day… Our goal has always been for Ethan to go to kindergarten in the fall of 2020 without requiring any tube feeds during the school day, and I think we’re well on our way.”
Some of Ethan’s favorite foods include yogurt and fruit, especially berries, mango and avocado. “He also loves peanut butter, Teddy Grahams and chocolate,” said Laura. “Anything crunchy and he is all for it, especially Cheetos… any kind.”