Good nutrition keeps kids who are medically complex out of the hospital

Lindsey Vaughn (left) with patient Aaron Fredericks and his mother, Carla.

Thirteen-year-old Aaron Fredericks is not unlike many of the children who receive primary care from Children’s Mercy's Beacon Clinic. Born with cerebral palsy and dysphagia, he has no use of his arms or legs, cannot eat by mouth and has had multiple surgeries and procedures.

But he’s still a healthy, growing boy. And Lindsey Vaughn, MS, RD, CSP, LD, intends to help his family keep it that way. As Program Coordinator for Nutrition Services and Beacon Clinic Dietitian, it’s Lindsey’s job to see that Aaron receives the normal nutrition he needs to stay healthy.

Aaron recently had spinal surgery and came to the Beacon Clinic for a post-op weight check. Lindsey ensures that Aaron receives the nutrition he needs to stay healthy.

“These kids may be medically complex, but they’re still kids,” Lindsey said, adding that the goal is to keep Aaron, and the many other Beacon Clinic patients on feeding tubes, growing strong and out of the hospital.

“Medicine can do a lot, but if you don’t have a basic foundation to work on, medicine doesn’t do what it needs to do. Good nutrition helps keep these kids out of the hospital, and that’s huge for quality of life,” she said. ”Who wants to spend their life at the hospital?”

Not Aaron, for sure.

The Beacon Clinic is nationally recognized as a patient-centered medical home, streamlining the health care process for parents who have a child with medical complexity. The primary care facility, on the third floor of the Children's Mercy Clinics on Broadway, follows nearly 300 patients.

"Good nutrition keeps these kids out of the hospital, and that's huge for quality of life," Lindsey says.

Many are non-verbal and non-ambulatory, using wheelchairs or ventilators. About 90 percent of them, like Aaron, are on feeding tubes, and Lindsey sees most of them as part of their well-patient pediatrician visits.

While most children eat more as they grow, naturally meeting the need for more calories, that’s not the case for kids like Aaron, whose nutrition has been delivered directly to his small intestine since he was 14 months old.

“Aaron can’t tell us ‘I’m hungry,’ or ‘I’m thirsty,’” she said. “He’s completely dependent on what we put in the tube.”

So she checks on him and her other tube-fed patients at least twice a year, just to make sure their nutritional needs are being met. She measures height and weight, of course, but also upper arm circumference, which is unaffected by fluctuations in water weight. She also for looks clues in each child’s physical appearance. Are knee and rib bones becoming more prominent? Are wounds healing normally? Are lips too dry?

Lindsey customizes feeding plans based on each child’s specific needs, adding micronutrients to the formula with a basic balance of protein, fat and carbohydrates. Because Aaron does not get weight-bearing exercise, for instance, she pays close attention to the vitamin D and calcium he needs for bone health.

“Medically complex kids can get other diseases – they can still develop diabetes or high cholesterol on top of everything else,” she said.

Lindsey customizes feeding plans based on each child's specific needs.

Lindsey also works with families to help prepare her tube-fed patients for surgery.

“Aaron recently had spinal surgery, and his mom and I worked really hard to get his weight and nutritional status in good shape before surgery.” Then they worked with him after surgery to make sure he was tolerating his tube feeds.

“I’ll usually ask families to come back and see me two weeks after changing the formula, just to make sure I’ve guessed right,” Lindsey said, adding that Aaron’s most recent weight check will cause her to pull back a bit more from his pre-surgery bulk-up to return him to his optimal weight.

“We have really appreciated her knowledge and guidance,” said Karla Fredericks, Aaron’s mother.

Lindsey sometimes meets concern from caregivers in her quest to keep her patients growing, and she understands the issue.

“The more these kids grow, the more difficult it is for parents to lift them. We have to consider quality of life for their caregivers, too,” Lindsey said.

Lindsey also helps families choose among various formulas and helps create balanced blended diets too.

As busy as she is with full days seeing patients, Lindsey loves her job. She began work at CM the Monday after receiving her Master’s degree from the University of Kansas 11 years ago, and worked as a dietitian in a variety of positions before taking her current assignment.

What she likes best about it?

“Each kid is a little bit different, and I like the continuity of seeing each child over time. In primary care we’re a team, and it’s nice to see them grow up,” she said. “The families know me, and it’s nice to build trust with them.”

Learn more about the Beacon Clinic at Children's Mercy.