A Great Place for Kids: Caitlin, San Jose

Mark Shwartz
Sunday, May 1, 2011

Visitors to Packard Children's Hospital may not know Caitlin Burns by name, but they’re likely to recognize her face.

“Caitlin’s poster is plastered everywhere at the Hospital,” says Packard pediatrician Carol Conrad, MD. “I often point to Caitlin’s poster and tell people, ‘See her? I know her!’”

Caitlin, now 16, was born with pseudo-obstruction of the gastrointestinal tract, a life-threatening condition that prevents the normal movement of food through her intestines, and an immune deficiency. Conrad and a team of Packard specialists have been caring for her since she was an infant.

“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 the Burns family of San Jose, Caitlin is not just a smiling poster child but a perfect example of Packard’s commitment to family-centered care. During her 15 years as a patient, 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.

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.”

For Caitlin, it’s the little things at Packard 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 a sophomore 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.

“Having spent as much time at the Hospital as we have, you learn to count your blessings,” says Jim. “Packard treats so many families that can’t otherwise afford care—they don’t get turned away.”

To ensure that Packard is able to continue serving families in need, Jim and Kelly have joined the Circles of Leadership annual giving program. “We give every year, which is important,” Jim explains. “There are so many services at Packard that families can’t get at any other hospital, and that’s all funded through donations.”

Caitlin’s story has inspired other relatives and family friends to support Packard Children’s as well. Her grandmother, Missy Ryan, began volunteering at the San Jose Auxiliary when Caitlin was 3 and eventually became president of the Association of Auxiliaries, overseeing all seven volunteer-run Auxiliaries whose events and activities raise funds to support uncompensated care at the Hospital. “Volunteering was something I knew I wanted to do, because we wouldn’t have Caitlin without Packard Hospital,” Missy says.

This year, in tribute to the Hospital, Caitlin prepared a list of the Top 10 Reasons Why Packard Is a Great Place for Kids, including:

    3. Pet Therapy—Dogs and bunnies cheer you up during treatment.
    2. Kid Focused—Treatments are personalized for kids, with everything from bubblegum anesthesia to red wagon transportation.
    1. It is a place where thousands of kids receive the best possible medical care from the best medical teams in the country!