Living with congenital heart disease: One man’s “game plan”

Matt-Ames check

Matt Ames is a 30-year-old from Minneapolis, Minn. He is a small business owner. He is a camp counselor. He is a self-proclaimed “freak athlete.” And, born with a congenital heart defect, Matt is also an adult being treated at a children’s hospital.

Matt was born with levo-Transposition of the great arteries. Today, several open heart surgeries and two pacemakers later, Matt is still a patient at Children’s Hospitals and Clinics of Minnesota – the largest pediatric cardiovascular program in the Upper Midwest and recognized by U.S. News & World Report as one of the best children’s hospitals in the nation for cardiovascular care – and continues to receive treatment at the same facility, by the same nationally-renowned medical team, as when he was born.

Matt-Ames baby2

"It's eye-opening what they can do now," says Matt. "Not so long ago I would have been considered lucky to be alive. Yet today, more and more children are able to survive this condition and go on to lead healthy, full lives. Technology and newfound disciplines have come so far."

Until only recently, infants born with congenital heart defects weren't expected to live past their teens. About 1 in 100 kids are born with a heart defect, but thanks to the advances made in congenital cardiac surgery, many are growing into adulthood.

"In the last year alone we had upwards of 250 patients in the clinic, and many of them were just like Matt – adults that were treated as children for congenital heart defects. It's great to see so many of them living healthy, active lives," said Dr. Chris Carter, pediatric cardiologist, Children's Heart Clinic.

"In addition to caring for thousands of pediatric heart patients each year, what makes Children's special is that we have a dedicated team of doctors to work with adult patients. It's an incredible, growing field, and our specialists are some of the best-equipped to treat and care for hearts of all ages and sizes. In fact, one of our oldest patient is in his 70's!"

As founder and owner of MN Pro Paintball, Matt does not allow his heart to define him. A company he launched upon graduating from high school, he has since grown the business to include a 200-acre outdoor paintball park in Lakeville, retail stores in Burnsville and Minnetonka, as well as an online store. He was also named the 2012 Minnesota Young Entrepreneur of the Year by the U.S. Small Business Administration.

Matt also does not forget how fortunate he is. Upon receiving a pacemaker transplant in 2008, Matt decided he wanted to give back to Children's. Thus, the Challenge for Children's (C4C) Big Game was born. Since the first annual event more than five years ago, a charity paintball event that has grown from 200 players to more than 700, MN Pro Paintball has raised more than $140,000 for the cardiac unit at Children's.

"Being born with a congenital heart defect is often a heartbreaking diagnosis for parents," adds Matt. "And undoubtedly for the child, it can be a challenging road to travel. Fortunately for me, and for so many others like me, there are places like Children's and excellent medical support systems to help us succeed along that road."