The smallest hearts often need the most specialized care. 6-year-old Ryleigh Hughes has already had more surgeries than many adults. Born with a rare and complex heart defect, her first surgery was at three days old. She also had open-heart procedures at two months and two years.
"The first ones were rough, really really rough, because we didn't know what was going on, and she didn't know what was going on," mom Victoria Hughes recalled. "And having to leave her and not knowing what to expect."
It's not the way Hughes expected her daughter's life to begin. From their Covington home, the young family bounced between Our Lady of the Lake in Baton Rouge and Children's Hospital New Orleans.
"We see this all the time, but for them it's an overwhelming experience," said Dr. Joseph Caspi. The Children’s Hospital surgeon performed all of Ryleigh’s procedures. He continues to work on her case with Dr. Les Hixon, a pediatric cardiologist at OLOL.
"It's a big burden on the family. Even though the child may be getting the care that they need, there are other impacts of congenital heart disease on these families," Hixon explained.
"We were in the hospital for two to three months the first time, and we lived in the hospital. Your life stops," Hughes said.
The bills, however, keep coming. That’s when the Louisiana Pediatric Cardiology Foundation steps in to help hundreds of families. The organization was founded in 1995 by parents in those same circumstances. It offers grants to pay for things like travel expenses, unexpected time off work, copays and other costs not covered by insurance. That support helps the little patients live as normal a life as possible.
One in every 100 babies is born with some form of heart defect. They can range from minor to complex. Ryleigh’s case is a complex malformation that involves two of her heart’s main valves. Thanks to advances in technology, most defects are now diagnosed well before birth. Hughes got the news when she was 18 weeks pregnant, but doctors didn’t realize the extent of Ryleigh’s problems until she was born. You’d never know she now has two artificial valves. Ryleigh is a ball of energy who runs and plays like any other 6-year-old.
"Eventually she will need some more procedures, but the long term prognosis is very good, and you can judge by the level of activity. I was really glad to see her running around," Caspi said.
Hughes owes her daughter’s life to Caspi and Hixon, but she’s also thankful to the foundation for making her own life much easier during a difficult time.
"You just gotta believe that it's going to be alright, and she made it," she said. "But I'm not gonna lie, I was crazy during those times, and she's our life."
The Louisiana Pediatric Cardiology Foundation hosts the 3rd annual Helping Heal Little Hearts fundraiser on Saturday, August 13 at the Varsity Theatre. Talk radio host Michael Berry will be here along with the Chee-Weez and V-Tones. General admission is $50 or buy a VIP ticket for $100. CLICK HERE for more information or call (225) 768-2590.