Ben Stewart, a 6-year old from Fishers, Indiana, isn’t afraid to hide his personality when he’s playing soccer or having fun with his older brother, Brady.
When it comes to a challenge, Ben doesn’t shy away. His mom described the kindergartener as “a tad ornery.” And she meant it as a good thing. In other words, he’s resilient.
For Ben’s whole life, he’s needed to be.
During Ben’s 4-week check-up, the pediatrician noticed something amiss with his heart and respiratory rate. The next day, the family took Ben in for more tests. Ben’s mother Ranae said she had a nervous feeling as the pediatric cardiologist was looking over the results.
“We could tell sitting in the room there was something wrong,” she said.
She was right. Ben had an enlarged heart. Dilated cardiomyopathy was the diagnosis – his heart muscle wasn’t pumping blood efficiently. An echocardiogram showed Ben’s heart was pumping about three times less than the normal rate.
The next step – waiting – made the scary diagnosis even more challenging. Ranae and her husband, Dave, had to wait to see how Ben’s heart responded to treatment in the next weeks and months.
But at the same time, they sought a second opinion about Ben at Riley at IU Health. There they met Dr. Marcus Schamberger, a pediatric cardiologist. Schamberger shared a clear path forward for Ben. Schamberger told them Ben’s condition hadn’t gotten worse, which was a good sign. Schamberger also told them there was reason to believe Ben’s heart function could improve.
Encouraged by the personal care and attention Dr. Schamberger was showing, Ranae interjected midway through the first appointment. We’re transferring Ben to Riley, she said.
"He gave us hope," Ranae said. It was the first time the Stewarts had felt that since hearing Ben’s diagnosis. Ben had a chance, she thought.
Soon after, Ben had a heart catheterization done so they could explore more thoroughly what was going on with his heart. Ben had other regular testing done in the next months. Ben’s treatment plan was simple: monitoring and medications. Dr. Schamberger encouraged the Stewarts by looking at Ben’s overall health. Even if his heart function was diminished, Ben was growing well, his color was good and he was hitting milestones.
Six months after his diagnosis, Ben’s heart showed improvement. Fast forward six years, and Ben’s heart function has returned to normal. His parents have told Ben that he has a special heart. He knows that his heart is one of the things that makes him unique. Dr. Schamberger likes to show the family Ben’s original echocardiogram – the test that showed his heart wasn’t pumping well enough – and compare it to where Ben is at now.
Ben’s journey at Riley involved a number of people, and the Stewarts said it was the support of the whole Riley family – from doctors and nurses to technicians and the administrative staff – that helped them emotionally along Ben’s journey. Sometimes, the little things stood out. During one trip to the emergency room for Ben, a nurse noticed Ranae might’ve been cold, so she brought a warm blanket for her.
“It is things like that that made me realize this is a phenomenal place for families,” Ranae said. “In Riley, we found a place that not only provides the medical treatment and plan that a child needs, but they also provide the emotional support for whatever the family is dealing with as well.”