Note: This article first appeared in the Spring 2009 issue of Focus.
At 18 months old, Jackson Garrow is a little boy with wild curls and a great big personality. He loves to make people laugh, adores his big brother, and likes to dance. He’s fond of trying on hats and racing to the mirror to see himself.
His mother describes him as "fun, resilient, and strong-willed." He has needed to be.
In his short life, Jackson has had five major surgeries. He currently sees nine specialists. He has serious medical complications stemming from a rare syndrome, known as VACTERL, that occurs about the fifth week of pregnancy when organs are forming. For some unknown reason, things go "haywire."
In Jackson’s case, his stomach was connected to his trachea instead of his esophagus. He has extra vertebrae at the top of his spine, an extra rib on one side, and a missing rib on the other. He has one kidney, a heart anomaly, and other serious health issues. Still, from the beginning, James and Tera Garrow of Elk Rapids have been repeatedly reassured by physicians that their son will be fine.
Surgeons at DeVos Children’s Hospital in Grand Rapids successfully operated on the three-day-old, fourpound baby to disconnect his stomach from his trachea and connect it to his esophagus. After four highly stressful months marked by pneumonia, a collapsed trachea, two episodes when his mother saved his life with rescue breathing, three additional surgeries, and nine trips to DeVos for esophageal dilatation, a gastric feeding tube was placed. The baby’s esophagus and vocal chords needed time to heal without trying to eat.
"People are born with a natural instinct to eat, but if you don’t eat, it goes away," Tera said. Jackson grew and thrived with a gastric tube - but he forgot how to eat.
A Team Approach
Since December 2007, Munson Medical Center’s Pediatric Feeding Program has helped children who won’t eat because of medical complications. They often associate eating with pain and cry at the very sight of food. An empty spoon can trigger a tantrum.
Jackson is one of 28 children currently receiving feeding therapy. Most were born prematurely. Some are developmentally delayed, have dysphagia, Down’s Syndrome, traumatic brain injury, oral cleft, or, like Jackson, are gastric-tube dependent. All have some form of feeding impairment or are failing to thrive. Children and their parents travel to Munson from as far as Frederick, Cadillac, Harrietta, and Prudenville.
"We are working with a very fragile population," said Occupational Therapist Dawn Brown. "Many times we don’t know why they aren’t eating - we have to be detectives. It’s usually much more complicated than it appears to be."
Local pediatricians are the key link in recognizing feeding impairment symptoms in their office. They are the catalyst for involving other Munson professionals, including dietitians, medical social workers, speech therapists, infant mental health specialists, radiologists, and others. Ten or more professionals may be involved in a child’s care at any one time.
"The team approach is vital - it’s what makes occupational therapy successful," Dawn said
Identifying the problem and teaching a child to eat is a long, difficult process that requires incredible patience and perseverance - from the professionals and the parents.
"When a mother isn’t able to feed her child, it’s devastating to the relationship because she feels like a failure," Dawn said. "Most of these families are in crisis. Many parents have been told, ‘You’re doing something wrong.’ Sometimes they end up force feeding the child out of desperation. Meal-time behavior is combative and the parents are so stressed out. It’s awful. It breaks my heart."
Dawn and Occupational Therapist Patty Flynn work with children in the Pediatric Feeding Program two and a half days a week. "As a therapist, it takes everything you’ve got," Dawn said. "I love it, though. If I can help a mom feel less guilty and less stressed and give her the tools for feeding her child - how much better does it get than that?"
Jackson and Feeding Therapy
Twice a week for the past year, Tera has driven Jackson to Munson for "swallow therapy."
In the beginning, Jackson wanted no part of it. He screamed, cried, and would not let his therapist even touch his face or lips. Very slowly, she won him over. After multiple visits, he finally allowed her to put the tip of a dry spoon on his tongue, and the work of teaching him to swallow could begin.
Jackson now eats tiny amounts of smooth puree, but not enough yet to even count calories. "It’s a very long road," Tera said. "It’s a lot of work and it’s very stressful. Dawn’s teaching me what I need to do at home four or five times a day. The therapy is as much for the parent as the child. It’s a big party when he takes a bite. We cheer and he claps for himself."
Tera’s original goal was for Jackson to be eating by his first birthday. "Dawn told me that wasn’t going to happen. That was hard to hear. I had no idea how long this would take, but she did. Dawn has been super supportive and so kind. She’s amazing. She’s my therapist, too. So many times I’ve sat with her and cried. A lot of it is so hard to hear."
On Jackson’s first birthday, his mom froze a tub of whipped cream, turned it out on a plate and put a candle in it. Jackson didn’t eat it, but he did play with it. "Now my goal is birthday cake for his second birthday," Tera said.