Heart Warrior Elena Thrives Years after D-TGA Diagnosis
When Elena had life-saving heart surgery at just two days old, her mom Amanda says they must have poured a little extra love and kindness in before they closed her up. Going from a devastating diagnosis of Dextro-Transposition of the Great Arteries (D-TGA) in utero to becoming a high-demand babysitter, “animal whisperer,” and competitive athlete, Elena has come far in her 14 years.
After Amanda’s perinatologist identified a potential defect at her 20-week anatomy scan, she and husband Brad were referred to Children’s Healthcare of Atlanta Cardiology to confirm the findings and begin to prepare for their daughter’s arrival and after-care. When Elena was born, she was taken by helicopter from Northside Hospital to the Children’s Healthcare of Atlanta Heart Center at Egleston Hospital where she received arterial switch surgery. Amanda says the medical professionals who cared for Elena then – and now – have been incredible.
“Their bedside manner is second to none,” Amanda said. “This is a stressful journey, but they deliver the facts in a direct but soothing way. When you look at her now, it’s easy to forget that Elena’s a walking miracle. All children are, but she’s kind of a medical marvel.”
Amanda says having Children’s Cardiology, in their backyard has been a huge blessing, especially because she and Brad live far from their extended families in Minnesota and Maryland. They see people bringing their kids to Children’s from all over the Southeast, and they’re grateful they can receive best-in-class cardiac care for Elena from Dr. Usama Kanaan no more than five miles from their house at the Center for Advanced Pediatrics clinic. Amanda said she believes they were placed here for a reason – or maybe several.
One of those reasons is Alison Mueller. Amanda got involved with Kids at Heart, which Alison leads, even before Elena was born. The women have several connections in common, and they live just a mile apart. Alison introduced Amanda and Brad to other parents of heart warriors for support before Elena’s birth, and they’ve continued to be actively involved in the program for the past 14 years. Elena has attended CHOA’s Camp Braveheart every year since the second grade, and it’s become one of her favorite weeks of the year. Through the St. Pius X Mothers’ Club, Amanda and Elena recently helped organize a food drive for the Kids at Heart pantry, which provides snacks and easy meals to families who are staying at the hospital for extended periods.
Amanda says Elena’s latest cardiac MRI confirmed that her heart function and development continue to look great relative to her condition. She started high school last fall and had planned to try pole vault and high jump this spring track season, but a soccer injury derailed her plans. She dreams of becoming a veterinarian and loves spending time with her friends and family including her 11-year-old little sister, Andie. Amanda says Elena’s CHD doesn’t stop her from being who she is and who she wants to be.
“This journey has been an exercise in relinquishing control and seeking acceptance for things that cannot be explained or fully understood,” Amanda said. “Our health is our greatest asset. When it’s compromised, you realize this more than ever. As a result, we really try to focus on enjoying the little things and taking care of our bodies so they continue to serve us well in the future.”
For more information about Children’s Healthcare of Atlanta Cardiology and our pediatric cardiology specialists, click here.