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When Stephanie DeHart welcomed her baby boy, Nicholas, in March 2003, she felt a mixture of joy and fear. Nicholas was diagnosed with a devastating heart condition called tetralogy of Fallot, which occurs in 1 out of every 1,000 babies. If left untreated, the condition can be fatal.
“It was scary when he was born,” reflects Stephanie. But hope can span the country, and in Nicholas’ case, hope came in the form of a referral from his cardiologist at The Medical University of South Carolina, who had completed a year of research under the guidance of renowned cardiothoracic surgeon, Frank Hanley, MD, at Lucile Packard Children’s Hospital Stanford. That referral brought the DeHart family to Packard Children’s when Nicholas was just a few months old.
Nicholas underwent three surgeries with Dr. Hanley and his team, with each surgery lasting more than 10 hours. By the final procedure, the four heart defects that make up tetralogy of Fallot were repaired. Nicholas’ relationship with Packard Children’s would be long-term, including annual visits. As a result, Nicholas and Dr. Hanley have built a strong relationship.
Stephanie has remained connected to Packard Children’s over the years as well. She and Nicholas stay at the nearby Ronald McDonald House during his visits, and often meet parents of children with tetralogy of Fallot. The DeHarts have become a resource for other families, giving a glimpse at what the future may hold.
Today, Nicholas is 16 years old and lives life to the fullest back home in South Carolina. Thanks to the exceptional care he has received at our hospital, Nicholas says he has never felt “different” from his peers and was able to do nearly everything every other child his age was doing.
One of Nicholas’ favorite activities is attending a summer camp, Camp Heartbeat, near Washington, D.C. The camp hosts children, adolescents, and teens with heart disease. Campers participate in a wide variety of activities such as dodgeball, soccer, and rock climbing.
“It’s cool to see other kids like me and be with other people like me,” Nicholas says.
He was a camp counselor-in-training last year, and hopes to do it again this year, encouraging other children and teens to not let having a heart condition hold them back.
When he’s not serving as a superstar counselor, Nicholas enjoys fishing, often going to the creek near his home to search for big redfish. He also teaches himself new skills like how to do a backflip thanks to YouTube tutorials.
Because of Packard Children’s donors like you, kids like Nicholas can receive the ongoing care they need to lead successful, healthier lives.
“I’m grateful for every day with my son,” says Stephanie, “I think he will do something to make the world a better place.”
Nicholas recognizes how important his care—and those behind the scenes supporting the hospital—are: “It is really helpful,” Nicholas shares gratefully, “Thank you.”