Caitlin Burns was born with an immune deficiency and pseudo-obstruction of the gastrointestinal tract, a life-threatening condition that prevents the normal movement of food through her intestines. Packard specialists have been caring for her since she was an infant.
Over the course of 15 years, Caitlin has been treated by specialists in surgery, immunology, gastroenterology, pulmonary medicine, endocrinology, genetics, and nutrition. She continues to visit Packard every three weeks for six-hour infusion therapies—an essential treatment that she will need well into adulthood.
“Caitlin has had amazing doctors and nurses,” says her mom, Kelly. “Their whole approach is, how can we make the hospital experience more normal for the child and family?”
For Caitlin, it’s the little things at Packard Children’s that make the difference. In 2007, staff members threw a party for her 12th birthday. They even let her ride her bicycle on the hospital’s rooftop patio.
Now in high school, Caitlin gets good grades and enjoys jazz dancing and ballet. Her condition is manageable, and her prognosis is good. She’s looking forward to college and, eventually, culinary school.
Like many kids with pseudo-obstruction disorder, Caitlin developed an aversion to eating at a very young age. “We had to put her in feeding therapy,” says her dad, Jim. “We had to re-train her to eat smaller meals more frequently.”
Little wonder, then, that her parents were surprised when their daughter recently announced her career choice. “I want to be a chef,” Caitlin says. “I want to open up a bistro. I just love to cook, any type of food.”
