She was born with half a heart, but you’d never know it. In fact, the title Emma Anderson, 9, is most likely to be known by today is the strong girl with the heart of gold.
When she was born, Emma’s parents, Robin and Trey, wondered aloud why she looked so purple. It was at first chalked up to a traumatic labor and delivery, but their world quickly turned upside down when a nurse thought she heard something not quite right with Emma’s heart. Nurse Jocelyn alerted Dr. Campbell, the head of cardiology at Children’s Healthcare of Atlanta, and he did an echo. The news was not good.
“We were in total shock, and we knew it was really bad when they told us that the helicopter we heard landing on top of the hospital was for Emma,” Robin said.
Emma was life-flighted to Egleston and diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a serious heart defect in which the left side of the heart does not fully develop during pregnancy. The right side of the heart must pump blood to both the lungs and the rest of the body, which reduces the blood flow to organs. If not treated, HLHS can lead to shock or even death. Emma underwent three open heart surgeries at 5 days of age, 4 months and 5 years old to manage her condition.
The surgeries are not a fix or cure, and we know that a heart transplant is in her future, hopefully way down the road,” Robin said. “But thankfully throughout her life, Emma has done the best one can do with what she’s been given, and we know we have a little miracle on our hands.”
Emma’s parents are intentional about letting their daughter live life to the fullest and giving her every possible experience. Last summer, Emma said she wanted to compete in a local triathlon hosted nearby her hometown of Senoia. If Robin felt a twinge of worry, she didn’t show it. She signed up Emma and her younger brother to compete in the race, and the whole extended family came out to cheer them on.
“She’d never done anything to that extent before, and let me tell you, that feeling of accomplishment when she crossed the finish line was amazing,” Robin said. “She did it again this summer, improving her time from last year, and she told us she wanted to compete in another one. I found the Atlanta Kids Triathlon, which we’ll be traveling to in August. This is all her!”
Emma also swims year-around and plays softball and basketball. While she is strong and loves being part of a team, she knows she doesn’t have the endurance of her peers.
“It gets to her sometimes, but she has the drive and will to want to do these things,” Robin said. “The whole goal is to improve your personal best, and her coaches treat her like everyone else. I feel comfortable letting her try new things because she’s a wonderful advocate for herself, and she speaks up when she needs to rest or make adjustments.”
Robin says she believes Emma receives the best care possible at Sibley Heart Center, and Emma’s confident outlook is reflected in the way she approaches her frequent appointments.
“She has no fear,” Robin said. “She knows all of the front office staff, the nurses and doctors, and they treat us like we’re one of their own. She wants to know exactly what’s going on with her heart, and she actually looks forward to going to the doctor. We’re blessed with Sibley, and I don’t know what I’d do without them.”
Emma’s community knows what a special girl she is. She’s received the “Heart of Gold” recognition at her school several times, and for her golden birthday this year she demonstrated that heart by asking friends and family to donate “all things golden” in her name to the cardiac floor at Egleston. Donations included Goldfish crackers, tiaras, gold fingernail polish and even gold slime.
“That was all her idea,” Robin said. “She really does have a heart of gold. I tell you what, Emma is living her best life right now! She’s taught us to live every day to the fullest.”