While he was in the hospital, Sam Shirley liked to study his own charts. It’s a skill he learned during long stays in the hospital battling inflammatory bowel disease. He also learned a few things about how it feels to be a patient.
Now an active 16-year-old in remission, Sam is using his first-hand experiences in the hospital and clinics to help improve the patient experience as a member of the Pediatric Advisory Council (PAC). The PAC at Monroe Carell Jr. Children’s Hospital at Vanderbilt is a group of current and former patients working together to improve hospital care.
“I’m someone who has been there,” says Sam. “I know what it’s like to be fed through a tube for a week.”
Sam’s experience with hospitals started at an early age. He had a healthy childhood until he began having stomach pains at 3 years old. After a myriad of tests by multiple doctors, he was diagnosed with ulcerative colitis.
“When he was first diagnosed, they told us to strap ourselves in because this was going to be a lifelong struggle,” said Sam’s mother Val Shirley.
When Sam and his family moved from New Jersey to Tennessee in 2006, their family doctor told them about Dedrick Moulton, M.D., an expert in pediatric inflammatory bowel disease at Children’s Hospital.
Sam continued to have painful flare-ups requiring hospital stays of up to a week. The disease was also affecting his growth because he could not absorb nutrients. In the 7th grade, he weighed only 58 pounds.
In 2009, Sam became very ill when the disease began to show up in his small intestine. Moulton diagnosed Sam with Crohn’s disease. Sam's own immune system was attacking his gastrointestinal tract. Boys his age are active and growing, but Sam was in pain, losing weight, and tired. Moulton's diagnosis pinpointed the the problem and Sam started on a path to healing. Distinguishing Crohn’s disease from ulcerative colitis can be difficult in children and teens, but these two forms of inflammatory bowel disease have different medical treatments.
With his more precise diagnosis, Sam began treatments with a new class of drugs called biologics. These genetically engineered medicines target specific parts of the immune system that cause inflammation. He responded well to treatment and is currently in remission. He has also grown into a normal height and weight range for his age.
“It’s amazing how well he bounced back,” said Val, who is also an advocate for Children’s Hospital as a member of the Family Advisory Council. “People who see him now can’t believe he’s the same young man. He now visits Children’s Hospital only about once a month.”
Now that Sam is in remission, he is using his experience to help make things better for others. Sam joined the Pediatric Advisory Council with two goals in mind. He wants to help the hospital staff provide age-appropriate care and support, particularly for older patient, and he also plans to encourage contact between current and former patients with similar medical experiences.
“While I was in the hospital, it would have helped me to talk with someone who has Crohn's,” says Sam. “It can be very unpleasant for a child to be in the hospital, but together we can make it better.”