Toddler Xander Thrives with Good Shepherd Feeding Program
Like many toddlers, Xander Kapler of Canton, Pennsylvania, enjoys eating hot dogs, chips and cheese, but for the first years of his life eating anything at all was a struggle.
In utero, Xander developed a congenital cystic adenomatoid malformation (CCAM), or lung mass, and was born at just 30-weeks gestation. The lung mass was removed shortly after delivery, and Xander spent three months in a neonatal intensive care unit (NICU) in Philadelphia. There, the newborn struggled with eating due to developmental delays and oral motor challenges. He was first fitted with a nasogastric tub (NG tube), and before being discharged from the NICU he received a gastrostomy tube (G tube) to ensure he received proper nutrition at home.
With the help of the G-tube, Xander ate three times a day and received 10-hour intensive feedings overnight. Despite these efforts, he did not meet size and weight expectations for his age. In December 2012, Xander began receiving Early Intervention services from a rehabilitation provider near his home, but he made little improvement - eating no more than a few bites at a time.
Under the recommendation of a nutritionist at an acute-care facility in Philadelphia, the Kaplers sought out the feeding clinic offered at Good Shepherd Pediatrics in Allentown and eventually pursued insurance approval for the intensive inpatient feeding program. Xander spent 95 days in the Good Shepherd Rehabilitation Hospital Pediatric Unit in Bethlehem, where he worked with a team of speech and occupational therapists.
Upon admission, Xander was unable to tolerate being in the feeding room or even sitting at the table – he would scream and cry. Therapists developed a personalized treatment plan and helped to establish a routine for mealtimes that slowly increased Xander’s tolerance for sitting at the table. First, his therapists encouraged simple acts – like touching food. Then they progressed to touching foods to Xander’s face and mouth.
With extensive modeling, training and other interventions, Xander began tasting food. He then progressed to chewing and swallowing very small pieces – the size increased incrementally over time. “The intensive program really helped,” says Elizabeth Kapler, Xander’s mother. “Therapists were really patient with him.”
As his care progressed, Xander also participated in feeding groups with peers. During group sessions, speech-language pathologists and occupational therapists used techniques, such as singing, playing and taking turns, to create positive interactions with foods. The success was not measured by how much Xander ate; instead, emphasis was placed on creating enjoyable experiences while he interacted with food. As Xander’s feeding habits improved, he was able to model touching, tasting, biting and swallowing for the other peers in his group.
During his stay, Xander preferred eating foods that were both crunchy in texture and salty in taste, but at his celebratory discharge party he enjoyed a soft and sweet cupcake with his team.
Now nearly 3 years old, Xander is in the 5th percentile for weight for his age and he regularly eats three meals a day with snacks throughout the day. “Now that he is eating so well, we are all able to sit down and enjoy meals as a family,” says Elizabeth. “It makes meal time easier, and he’s happier.”