Hayley is a 2-? year old girl who is followed in our feeding clinic for poor intake. She has a history of poor feeding and breathing problems caused by micrognathia (small jaw), laryngomalacia (soft airway in the neck) and bronchomalcia (narrow airways in the lungs), irregular shaped ribcage and poor breath support. She drinks from a bottle (which she has access to at all times) but refuses all foods and a cup. She drinks small amounts, just enough to maintain a low weight and gains weight very slowly. Because of all her breathing problems she burns a lot of calories just breathing!
She had been coming to speech therapy for about 8 months where we worked on exercises to improve her oral motor movements, stretching and strengthening of her trunk, upper back and ribcage and behavioral therapy to improve her acceptance of foods. She cried through most of the therapy and made very little progress in accepting foods.
Our initial focus was on her nutrition and her breathing. We wanted her to have enough nutrients and calories to gain weight and grow well. We felt it was important not to compromise her nutrition while working on her feeding program. Our dietician recommended a high calorie formula with a specific number of ounces to be taken per day. We felt that her biggest barrier to successful feeding was her limited breath support so physical therapy and speech therapy focused on better head and neck alignment, ribcage movement and trunk strength. Her mother kept careful track of her intake and reported that she was barely taking in enough calories and when she got sick (which was often) took even less.
At this point, it was time to consider alternative means of nutrition. We had been hoping to avoid a G-tube (gastrostomy tube or feeding tube placed directly into the stomach) however, it seemed that Hayley?s growth was being affected by her inconsistent and poor intake. She was also facing impending surgery to correct her jaw and it was felt that she would not eat well afterwards. Therefore the decision was made to place a g-tube. She would continue to take feedings during the day by mouth but would make up missing calories via the tube through continuous feedings at night.
Surgery to place the tube went well as did the adjustment to nighttime tube feedings. When Hayley returned to therapy there was one striking difference about her, she was smiling! In fact, it was the first smile the therapist had ever seen from Hayley! We can only guess that it was related to the fact that with improved nutrition she felt better and was a happier child. She still cried through the exercises but with the extra calories her endurance improved and she started to gain weight quickly for the first time in her life. Her parents were also able to relax about her intake and were able to offer her the bottle and foods without the pressure of having to push her to eat.
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