Lilly Cochran prepares for her moment in the spotlight at this year’s Heart Ball.
Story by Barry Kaufman + Photography by Stephine Williams
Lilly Cochran’s mom, Kayla, describes her daughter with one word: energetic. It’s not an unusual term to describe a precocious girl of 5 years. Lilly loves nothing more than riding her bike, playing with her friends and taking trips to the park. If not that, then she’s content to play dress-up, exercise her imagination with her Barbie dolls, or help her mom in the kitchen, baking cookies.
Born with two heart murmurs, Lilly Cochran is a shining example of how children can overcome adversity through the simple act of being children.
“She gets tired a little more easily than other kids, but she loves to play and have fun,” said Kayla. “If you didn’t know anything was wrong with her, you wouldn’t know.”
Lilly had just been born when doctors noticed irregularities in her heartbeat during a routine checkup. Kayla knew right away something was off. “The doctors were listening to her heart, and their faces didn’t hide it very well,” she said. Specialists were brought in to examine the newborn and an echocardiogram quickly revealed that the child had not one but two murmurs, excessive sounds in the heartbeat caused by defects in the valves.
Heart murmurs are not uncommon in children, but they can serve as warning signs of congenital heart defects. In Lilly’s case, they presaged a series of harrowing medical incidents. When she was 2, a backflow of deoxygenated blood turned her skin blue and led to an ambulance ride to the hospital. The first murmur closed when Lilly was 3, but the other one turned out to be a ventricular septal defect, essentially a hole in her heart. It led to atrial valve leakage and an obstruction in her aorta due to the backflow of blood.
These incidents continue to this day, despite Lilly’s energy and constantly bright outlook. “She gets tired and she gets chest pains sometime because she gets arrhythmia. She’ll tell you, ‘My chest hurts; I need to rest.’ She knows,” said Kayla.
“The majority of the time as long as she’s breathing OK we try not to panic. It happens once, maybe twice a month, but we probably only go to the hospital once or twice a year.”
Because Lilly’s heart makes it easy for this energetic young girl to overdo it, Kayla makes sure all of her teachers are CPR certified and are well versed in what to do should an incident occur. Apart from the occasional visit due to an event, Lilly goes in for an echocardiogram every six months to monitor her heart’s progress. Her cardiologist’s main concern now is the valve leakage, something that tends to increase in patients around her age. “Once that happens, they’ll have to do surgery to correct it,” said Kayla. “We’re not looking forward to that.”
What she does have to look forward is this year’s Southern Coast Heart Ball, where Lilly will serve as an honored guest. “She doesn’t really understand yet,” said Kayla, “but she has enjoyed everything that’s had to do with Heart Association so far. She loved meeting Maggie (Maine, 2018 honoree). She has pictures of her that she takes out and says, ‘That’s my friend Maggie.’”
Between now and then, young Lilly will celebrate her sixth birthday with a Barbie- themed bash and a very special trip to Disney. It’s a very special way to celebrate a very special young girl.
“She doesn’t necessarily see herself as different from other kids,” said Kayla. “I don’t see her comparing herself to other children… however, she knows. We call it her special heart. She knows that she has a special heart and has to see special doctors.”
Open Your Heart
You can meet Lilly and hear her inspiring story during this year’s Southern Coast Heart Ball, from 6-10 p.m. Feb. 2 at The Westin Hilton Head Island Resort & Spa. For more information, visit southerncoastheartball.org.