Cameron’s Story – Adult Congenital Heart Program

24-year-old Cameron is a young man who is full of surprises. He may be quiet and shy when you first meet him, but if you mention one of his passions, like country music, bowling or nachos, his face absolutely lights up.

Cameron’s parents, Chris and Kristi, were surprised by Cameron from the very beginning. Shortly after his birth, they learned that their son had Down syndrome and a complex congenital heart condition called Tetralogy of Fallot. “We’d read all the parenting books and then we thought, ‘Well, what do we know about Down syndrome? Pretty much nothing!’” Kristi recalled.

Cameron had surgery as a baby to repair his heart issues, but he continued to have difficulty eating and keeping food down. So when Cameron was 2, the family came to Children’s Mercy in Kansas City, where a GI team diagnosed Cameron with a duodenal web: tissue that was blocking nearly the entire passage between his stomach and intestines. A short time after they came back home to Springfield, Mo. after his duodenal repair, Kristi had planned to gradually reintroduce foods one at a time, but Cameron surprised her once again. His grandpa babysat for a few hours and the now-happy toddler ate anything Grandpa put in front of him!

As a young adult, Cameron now benefits from a collaborative team of specialists to help him manage his health concerns. At Children’s Mercy, he sees Alan Tong, MD, at Pediatric Cardiology of Springfield and Toby Rockefeller, MD, Medical Director, Interventional Cardiology, at the Ward Family Heart Center in Kansas City. “Because of his repair, Cameron’s heart needs to be treated differently from a typical adult, so we appreciate the Adult Congenital Heart Program at Children’s Mercy,” said Chris.

And when other illnesses arise — such as a recent bout with pneumonia and pleural effusion that landed Cameron in the Emergency Department at Mercy Springfield Communities and an Intensive Care Unit in St. Louis — his adult doctors can coordinate care with Dr. Tong, Dr. Rockefeller and the Children’s Mercy team.

Kristi’s experiences with Cameron’s heart condition inspired her to pursue a career in cardiology care. “I became a cardiac sonographer because of Cameron,” Kristi shared. “I was so in awe of what they could do to fix such itty-bitty kiddos’ hearts that it changed my life.”

As a medical professional herself, Kristi sees many benefits to the partnership between Children's Mercy and Mercy Springfield Communities. “The travel for Cameron's care was awfully hard for us. Even trying to figure out things like where to do laundry when we were away from home made me appreciate the idea of Children’s Mercy growing more in the Springfield area and helping additional families.”

In her work at the Children’s Mercy cardiology clinic in Springfield, Kristi sees firsthand the need for this kind of specialty care — not just for her own son, but for her community. “The patients that we support are often from very rural communities and there aren’t a lot of options for them,” she explained. "It’s huge to have as many specialties offered right here in Springfield as we can.”

While Kristi and Chris are looking forward to fewer hours on the road, Cameron surprised them by saying he didn’t mind going to Kansas City to see his doctors. Why? “Because I get to sleep the whole time in the car!” he said.