Finding new friends and comfort amid medical crises
Hospitals are a familiar place for Shawn, 5, who’s been in and out of them for more than half his life.
In just three years, Shawn has been diagnosed with eosinophilic esophagitis (EoE), urinary reflux and oropharyngeal dysphagia. These diagnoses have resulted in emergency department visits, hospital admissions and a tough day to day.
At the onset of his condition, Shawn was getting sick daily, losing nearly eight pounds. During this time, Shawn’s family lived in Montana. Whenever he needed treatment for his ailments, his parents had to drive to the closest children’s hospital located nearly 800 miles away in Colorado.
When Shawn and his family moved to Puyallup, Mary Bridge Children’s became a regular part of his routine.
Meeting Shawn’s “Mary Bridge friends”
Being the outgoing and friendly kid he is, Shawn has made lots of friends at his “home away from home” — his favorites being Mary Bridge Children’s volunteers and child life specialists.
The donor-supported Child Life Services program helps reduce the anxiety and fear that can be associated with medical environments. For Shawn, that means having someone to talk to during his appointments as a helpful distraction.
“Child life specialists have been some of our favorite people during the whole process,” Shawn’s mom, Rachel says. “It’s so nice to have that constant when he goes in for an appointment. He knows he has a friend there. That’s what he calls them — his friends.”
While hospital stays are never wanted or expected, Shawn and his family appreciate several highlights, such as volunteers dropping off teddy bears and coloring activity sheets, as well as his care team making his room feel more like home.
“Both times we’ve had longer hospital stays, the nurses have decorated Shawn’s room,” Rachel says. “They hung up different pages of things he loves. They really personalized it and made it less like a hospital. It was such a warm and nice touch that shows they really care about Shawn. It’s helpful to have that level of comfort as a parent. It extended beyond the decorating — if I had to run or to take a break, they were happy to just sit with him and chat.”
Navigating a lifelong condition
EoE, urinary reflux and oropharyngeal dysphagia all affect Shawn’s daily life in a significant way from difficulty swallowing to accidents.
“Shawn’s diagnosis at such a young age means his care with medical teams will be an ongoing thing,” Rachel says. “But, with the help of doctors at Mary Bridge, Shawn has been able to participate in many things like a ‘normal’ kid.”
Shawn meets regularly with his gastroenterologist and urologist, and he’s started attending speech, occupational and feeding therapies at Mary Bridge Good Samaritan Children’s Therapy Unit (CTU).
“It definitely takes an emotional toll on him and on us as parents,” Rachel says. “We don’t know what’s going to happen next, and he gets nervous for all the procedures. But overall, he’s been a light through all of it, keeping us smiling and positive.”
Rachel also credits Shawn’s care team like his urologist Kevin Gandhi, MD, who ensures the whole family is included in Shawn’s care by adding Shawn’s dad on a video call when he’s at work.
“Dr. Gandhi is very intentional with his care and makes sure that parents have input when it comes to their child’s health journey,” Rachel shares.
A kid who’s “out of this world”
Shawn now attends kindergarten and loves all things outer space.
“I’m just so proud that he loves to learn and is wicked smart,” Rachel says. “He just embodies this heart of gold — wanting others to feel special, important and loved. It’s an honor and a privilege to be his mom. His patience and perseverance — plus the providers and people he loves seeing at Mary Bridge — make for a happy kid who faces everything with a warrior spirit.”
You can support programs like Child Life that go beyond medicine with a gift today at supportmarybridge.org.