Beating the Odds for a Better Life

When Richard James was only three days old, his heart failing, his family was told he wasn’t going to make it.

“He was born on a Monday, went home on a Wednesday. By Thursday he was blue,” recalls Sherry, Richard’s mother. Even without an immediate diagnosis, Richard was in critical, unstable condition. His family was invited into the hospital room to say goodbye.

Although he wasn’t expected to live through the trip, Richard was transported to the children’s hospital in Charlotte. At less than a week old, he underwent his first heart surgery – and survived. This wasn’t the last time Richard defied everyone’s expectations.

Now 21 years old, Richard has survived countless cardiac surgeries, including that miraculous first week of life when a pediatric cardiologist fixed his heart. Richard lived with a shunt in his brain, even though the neurologist said this procedure should have resulted in “severe neurological devastation.”

Running into Difficulties

With encouragement from one wise cardiologist, the James family didn’t allow Richard to live a life of limitation. They encouraged and supported him from the sidelines as he played soccer, basketball and even football. Beyond all medical explanation, Richard seemed to be thriving. But there were subtle signs of differences at a young age. For instance, there were times when he struggled to find the words for common items.

Richard is the first to admit he has learning differences. As he entered school, the learning differences became more prominent. From timed tests to books that seemed easy for his friends, Richard found himself needing more time than the rest of the class. He wondered, “Everyone else can do this – why can’t I?”

“When you get into school, you’re with all of your friends. They’re finishing everything in no time at all, and sometimes you need extra time,” says Richard. “It’s hard for a teenage guy to admit that he needs extra time to do a math problem or read a book.”

Sherry saw these differences, too. “He had the information. He had the intelligence,” she says. “He just couldn’t get it verbally out.”

A Troubling Pairing

Thanks to advances in surgical techniques, specialized care teams and technology, “heart kids” like Richard are living longer. But for many of these children, there are other difficulties that present themselves as they get older and start school. Heart defects and learning disabilities go hand in hand, but unlike the scars left behind, these challenges can be harder to detect.

Because Richard is intelligent and personable, many of his teachers refused to believe he had a learning disability. Richard continued doing what he had done for years – surviving. He even survived a teacher who told him he wasn’t going anywhere.

For years, Sherry had to fight for Richard to receive the classroom accommodations he deserved. She had to seek out specialists on her own to get an accurate diagnosis. In fact, according to Levine Children’s Hospital pediatric cardiologist René Herlong, MD, many of these disabilities can go undiagnosed for years.

“We’re going to continue to unearth problems or challenges in the lives of our patients because we’re getting better and better at fixing their hearts,” says Dr. Herlong. “It’s important to have a special cardiac neurodevelopmental program because these kids have different needs – different challenges – than other children.”

Help for Heart Kids

When Richard’s family heard that The HEARTest Yard, an initiative of the Greg Olsen Foundation, and Levine Children’s Hospital were partnering to develop a neurodevelopmental program for children like Richard, they were “blown away.”

The prospect of a cardiac neurodevelopmental program is welcome news for the James family, who say that having help with learning disabilities is just as important for heart kids as the pacemakers and medications. They know the overall community need is great, as it could help bring awareness to a common problem, speed up the process for the many kids like Richard, and let them know they aren’t alone. Sherry adds, “The fact that other people are going to step in for these parents and say, ‘We’ve got your back, you don’t have to figure it out on your own.’ That’s a huge gift.”

With the support of family and friends, Richard graduated high school on time. And now, he’s in college – studying welding. Even today, Richard continues to defy odds. After all, as his cardiologist told Sherry, “I didn’t save him so he couldn’t live.”