The Road to Three Miracles
When Summer arrived at Children’s Hospital of Richmond from her home in Pocahontas, Ark. on Aug. 1, 2006, she was at the end of her rope. Struggling with her three children’s medical and feeding challenges since their births, Summer was physically and mentally exhausted. But when she attended her first Children’s Feeding Program parent meeting, Summer said, “I just felt like I was home.”
Serving patients since 1998, Children’s Feeding Program at Children’s Hospital of Richmond assists children from birth to age 21 with medically-based feeding and/or growth problems that may inhibit their ability to drink, chew or swallow. Working with an interdisciplinary team of specialists, the program is one of a few that integrates oral-motor and behavioral approaches to therapy in its day patient and outpatient programs.
Betsy Clawson, PhD, LCP, Behavioral Coordinator of Children’s Feeding Program, said in addition to the combined therapy approach, the hospital’s program is unique because it has staff devoted solely to the program, allowing improved communication and continuity of care. The program also accepts medically-complex patients who may have not succeeded in other programs.
The Journey Begins
Born with Pierre Robin Sequence, a combination of birth conditions that can include a small or displaced lower jaw and a tendency for the tongue to fall back in the throat, four-year-old Rebekah and two-year-old twins Jacob and Matthew, had breathing and feeding difficulties that left them dependent on feeding tubes for nutrition. After Rebekah’s Dec. 2001 birth, Summer noticed that her second child was breathing irregularly. Although she “didn’t want to be one of those moms who takes her kid to the ER for just anything,” Summer took Rebekah to the hospital where she was diagnosed with sleep apnea and jaundice. Two and a half months later, because Rebekah was not gaining weight or keeping food down, she was also given a feeding tube. Over the next 18 months, Summer took Rebekah to specialists in Arkansas, California and Tennessee who prescribed a variety of surgeries, studies and treatments, none of which allowed her to learn to eat by mouth.
When Jacob and Matthew were born in Feb. 2004, Summer said, “I made up my mind if this happened again, I was going to do it different.” Born with a milder version of Pierre Robin Sequence, Matthew and Jacob received early physical and speech therapy and were given opportunities to eat by mouth but ultimately received most of their calories from feeding tubes. By the time they were 18 months old, the boys were “not doing age-appropriate feeding,” and Summer said, “as they got bigger, it got harder to keep up with their growth needs.”
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