Our patients’ stories: treating Sean’s feeding difficulties

Dan’s son Sean was born prematurely, with a long list of medical concerns. Because Sean was so fragile at birth he was unable to feed himself during infancy, which led to feeding problems as a toddler. Here, Dan describes the hurdles he and his family faced during Sean’s younger years, and the important role Boston Children’s Hospital’s Growth and Nutrition Program played in helping Sean eat solid foods.

By Dan Francis

Sean as a baby, with his feeding tube

For the first five months of my wife Jean’s pregnancy, things were going smoothly. But at the 20-week mark a routine ultrasound showed that our soon-to-be born son Sean was small for his gestational age and there was a low amount of amniotic fluid surrounding him in the womb. Jean was told to stay home from work and get as much bed rest as possible. Five weeks later another routine check-up showed that the bed rest hadn’t been enough; her blood pressure was now elevated (called preeclampsia) and could potentially hurt the baby. That’s when everything got serious.

We spent the next three weeks in the hospital while doctors and nurses monitored Jean and the baby. Doctors determined that a complication with the placenta was restricting the baby’s nutrients and he was only receiving about half of what he needed. Based on the discovery it was decided that the baby’s only chance for survival would happen outside the womb. A C-section was scheduled, and though he came into the world early, we were delighted to meet Sean.

Because he was premature and very small, Sean was born with several health problems. His lungs, heart and digestive system were all in danger of developing serious complications, but despite it all, Sean held on. It was amazing. He could almost fit in the palm of my hand, and still he had a fight in him that’s stronger than you see in most adults.

Dr. Huh monitored Sean's physical health looking for medical causes of his feeding difficulties.

The next several months were just as touch and go as his first two weeks. His blood pressure plummeted and he developed an eye condition that almost left him blind. He also developed kidney stones and underwent surgery to correct a hernia. That’s a lot for anyone to go through, never mind a kid who barely weighed more than one pound at birth.

Because of all his medical issues, Sean was too weak to eat on his own for the first few months of life. He had the ability and and will to eat—but not the required lung capacity or strength—so he was fitted with a gastric feeding tube (G-tube) that would give him all the nutrients he needed.

Slowly Sean grew and got stronger, but he still refused to nurse or drink from a bottle and continued to get his nutrients from his G-tube. We tried to expose him to baby foods, but he wouldn’t even taste most of them. (He did seem to have a slight preference for crunchy foods like crackers and Cheerios, but refused to eat them regularly.)

Days would go by without him eating. It got to the point where we’d get excited anytime Sean so much as nibbled on a cracker! It was his speech therapist who first told us that Sean’s refusal to eat was most likely a behavioral issue and not a medical one. She explained that as a premature baby with so many medical concerns Sean had very little control over his surroundings during a crucial part in his development. The one thing he could control was if and when he ate and the behavior had intensified with time. But after two years of follow-up care with his speech pathologist (a feeding specialist) and dietitian, Sean still refused to eat. Out of ideas, his medical team suggested we make an appointment with Boston Children’s Growth and Nutrition Center.

Learn more about Boston Children’s Growth and Nutrition Center in this video.

At Sean’s first appointment at Boston Children’s we met with a dietitian, social worker, pathologist and Dr. Susanna Huh, a gastroenterologist, and Dr. Nancy Sullivan, a behavioral psychologist. Dr. Huh monitored Sean’s growth and nutritional health, while Dr. Sullivan worked with Sean on behavioral techniques that encouraged him to begin exploring food. We also had regular appointments with Growth and Nutrition Center speech pathologists and dietitians.

At first Sean was still very resistant to trying any food unless it was totally on his terms, but thanks to Dr. Sullivan’s many suggestions and hands-on approach, Sean started opening up to new foods. She gave us tips on better managing Sean’s mealtimes, like not forcing him to stay at the table if he wouldn’t eat and advice on keeping mealtimes tension-free. She also helped us capitalize on Sean’s interest in crunchy foods, which led to us successfully transitioning him from crackers and cereal to crispy veggies like carrots, peppers and celery. With Dr. Sullivan’s help we got Sean out of the habit of grazing on snacks and milk in the afternoon, which affected his mealtime appetite.

Dr. Sullivan helped Sean and his parents alleviate some of the stress they associated with mealtime, which improved Sean's appetite.

Sean’s tube feeding schedule often disrupted his sleep. If he came to breakfast sleepy, getting him to eat that morning was particularly difficult. Dr. Sullivan helped us work on relaxation techniques with Sean that allowed him to sleep better through the night, which made breakfast much easier. The more Sean ate, the more Dr. Huh could begin weaning him from tube feedings. This improved his appetite and led to more eating.

That spring, one year after first arriving at the Feeding Clinic, Sean was getting ALL of his nutrients from food and maintaining a healthy weight. His feeding tube was removed and he’s been eating orally ever since.

These days, if you came by our house, you’re more than likely to catch Sean happily crunching away on a snack of raw, green peppers. Chances are he’d be dancing around the table, singing, “It’s so yummy in my tummy!”

Seeing him so comfortable with food, you’d never suspect how much work it took to get here. It was a long, hard road to travel, but watching him smile and dance with crumbs on his cheeks makes it all worth it.