Lifeline

December 02, 2014
Conquering complex medical conditions together: One family's journey with Kennedy Krieger
Willie Burson

Twelve-year-old Willie Burson loves reading, drawing, and playing golf. He’s bright, too, having recently been accepted to a talented youth program. Seeing him today, you’d never guess this was the same boy whom doctors once said might never walk or talk.

Willie’s medical conditions are complex. He was born with a form of hydrocephalus and a Chiari brain malformation, which required several surgeries. He was also diagnosed with low muscle tone, damage to his central nervous system, and a swallowing and feeding disorder.

His parents, Tom Burson and Caroline Morton Burson, knew they needed help from experts who could address Willie’s multiple problems. They brought Willie to Kennedy Krieger Institute, where a network of specialists could collaborate to address all aspects of Willie’s care.

Guiding Families Through Complex Medical Care

This collaborative team approach is a hallmark of care at the Institute. For patients like Willie who need treatment and therapy from multiple specialists, everyone uses a unified approach.

Willie’s care was overseen by Dr. Bruce Shapiro, neurodevelopmental pediatrician and director of neurodevelopmental disabilities training at Kennedy Krieger. “Parents need someone to help prioritize and coordinate their child’s care—it can be overwhelming to the family,” says Dr. Shapiro. This was certainly true for the Bursons, who had previously taken Willie to multiple specialists and hospitals, with no consistent treatment plan.

“In most other centers, families have to go to different places for care, and the specialists in one area don’t necessarily talk with another. Here, we address all of a child’s needs in a comprehensive coordinated fashion,” says Dr. Shapiro.

Peeling Back the Layers

Willie BursonOne of the biggest struggles for Willie was feeding. The basic act of eating, which seems instinctual, did not come naturally for Willie. While other babies were happily grasping bits of pasta and veggies and feeding themselves, Willie refused to take a bottle or eat, starting the day he was born. More to the point, he physically could not do it, having difficulty chewing, swallowing, and keeping food down. Weighing just 12 pounds at age one, he was neither thriving nor meeting developmental milestones. Doctors recommended a G-tube, and when Willie was 2½, he began an eight-week inpatient stay at the Institute’s Feeding Disorders Program.

Willie’s progress in the feeding program was slow but sure. “It was like peeling back the layers of an onion,” recalls Caroline. “We’d make a step forward and five steps back.”

Despite making progress, his problems were more complex than anything a short-term stay could fix. When he was discharged, his parents continued the feeding techniques at home. But Willie was vomiting and aspirating into his lungs. Then, his lungs collapsed. “That was when we almost lost him,” Caroline says. She remembers that period as “a dark, dark time.” But through all of their struggles, Caroline says, Kennedy Krieger was there.

“I can honestly say, he would not be alive had it not been for Kennedy Krieger.”

Every Stage, Every Step of the Way

Just like any child, Willie’s needs have changed as he’s grown. But for kids like Willie, it’s important for parents to have an expert to help them figure out which problems need to be addressed first and which ones can wait. “Prioritization is just as important as coordination,” says Dr. Shapiro. “The picture changes as the child ages.”

When Willie had difficulty in school, Dr. Shapiro wrote letters to his school so that Willie could receive the physical and occupational therapy he needed to succeed.

This past spring, after nearly 10 years of being fed through a tube, Willie was able to eat without it. When the port for the feeding tube was removed from his abdomen, he was afraid at first, because it had been part of his life for so long, says Caroline. “It was his lifeline.”

Willie BursonNow, she says, he’s doing great. He’s healthy, he hangs out with friends, and he’s eating. These days, Willie has been known to eat salmon, lobster, and sushi. “He has a very sophisticated palate,” jokes Caroline.

For all the struggles he has endured, Willie has persevered in the face of adversity, with the dedication of his parents and his team at Kennedy Krieger, and his own determination. The Bursons recall vividly a moment years ago when Willie was in the hospital watching the scene in "Bambi" when the fawn falls down, and Willie said out loud, “Get up, Bambi, you can do it!” It was this positive attitude that helped him overcome so much and become the smart, inquisitive, healthy, and well-rounded child he is today.

“When Willie was two, we were very afraid of what was ahead,” recalls Tom. “The contrast between what our fears were and the reality today couldn’t be sharper…We are extremely thankful every day.”

Kennedy Krieger will continue to care for Willie as he grows older. “Kennedy Krieger is a part of Willie,” says Caroline. “We will never stop needing what Kennedy Krieger has.”

Caroline Morton Burson’s goal is to write a book about her experience raising a child with special needs. Read an excerpt of her work.

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