By Fallan Patterson
Staff Writer

They knew something was wrong with Carson within minutes after his birth on a January morning. His oxygen and blood sugar levels were low and he required additional monitoring.

By nightfall, Carson’s parents, Todd and Ashley Swingle, knew the truth: Carson had a congenital heart defect.

For nine months, Carson was in and out of Arnold Palmer Hospital for Children in Orlando – he had his first heart catheter at 4 days old and experienced his first open heart surgery at 11 days old. Carson suffered a stroke, which caused infantile spasms, often occurring 100 times in one episode, and required oxygen therapy at home.

One of Ashley’s favorite memories of Carson is holding him on the front porch of their new home while Carson giggled as his older brother, Tyler, ran around the front yard.

“It was amazing to us, given everything he went through, he was generally happy,” Ashley Swingle said.

Yet, despite his health, the Swingles, along with their then 3-year-old Tyler, believed until the final week of Carson’s life in October 2005 that he would make it.

“He was in serious condition (his whole life),” Todd Swingle said.

During what were the last 12 days of Carson’s life, Todd, who called himself “very action-oriented,” contacted the University of Central Florida’s Foundation about setting up an endowed scholarship in Carson’s name.

The nurses the Swingles often came in contact left a lasting impression on the family, specifically a pediatric nurse on duty during Carson’s last stay who worked 12 days straight to ensure the boy got the best possible care.

“We counted on the nurses to really talk to us and sort through everything,” Swingle said. “That really impacted us.”

After Carson’s death Oct. 17, 2005, in lieu of flowers for their son’s funeral, the Swingles asked for donations to set up the Carson Alan Swingle Helping Hearts Memorial Endowed Scholarship within UCF’s College of Nursing.

The Swingles used Carson’s Florida Prepaid College Fund as “seed money” to build up the required $25,000 for an endowed scholarship.

The scholarship is specifically for students pursuing a career in pediatric critical care nursing or a student who has personally been affected by a congenital heart defect or disease.

This spring, the Swingles will award the fourth scholarship at a UCF luncheon. The recipient receives a plague with Carson’s picture and the story of his life; the Swingles even give the scholarship board their suggestion on who should get the scholarship.

The Swingles also plan an annual poker tournament to benefit the Children’s Heart Foundation, which Todd said was the only organization in the country that 100 percent of the proceeds go toward researching heart defects. The Swingles typically raise between $15,000 to $20,000 each year for the organization.

Celebrating Carson

Every January, the Swingles celebrate Carson’s life with a birthday party, complete with a cake made by dad, a balloon-release filled with notes for Carson and a teddy bear collection to donate to Arnold Palmer Children’s Hospital’s Pediatric Critical Care Unit.

Since Carson’s death, his family has used the time to not only remember him but educate people about congenital heart defects.

According to the foundation, congenital heart defects are the number one birth defect in terms of childhood deaths in the United States and one in 100 children, or 40,000 annually, are born with heart defects.

“I do believe everything happens for a reason and not letting your experiences go to waste,” Todd Swingle said. “Whether it’s raising money or making people aware of (heart defects) or making people know to appreciate their kids, I think it’s important to keep it a positive experience.”

Ashley Swingle said she wants a greater awareness of heart defects including more screenings at birth for defects – there are 35 different heart defects, very few of which are hereditary  – and additional funding for research on treatment and prevention.

“We were oblivious to (heart defects) before Carson but people in general don’t realize how common it is,” Swingle said, adding that Tyler has been tested for heart defects and does not have one. “People don’t talk about it. You cannot tell by looking at someone that they have a heart defect.”