When Sienna’s parents look back on her two short years as a heart warrior, one word comes to mind: Resilience. During Shannon’s pregnancy, a prenatal echocardiogram showed that Sienna possibly had Coarctation of the Aorta (COA), which was confirmed immediately after birth. She also had Esophageal Atresia/Tracheoesophageal Fistula (EA/TEF), which was repaired when Sienna was three days old. After four weeks in Neonatal Intensive Care Unit (NICU), she then had heart surgery at Children’s Healthcare of Atlanta Heart Center to repair the COA. Finally, at six weeks old, she came home for the first time.
After what she has been through, Sienna’s parents, Nick and Shannon, said they have come to appreciate each milestone.
“It teaches you to be thankful for every day, celebrate the little victories,” Nick said. “When you have a child who has gone through something like Sienna, it makes you realize what is important in life.”
Shannon said that the resources and support they received during their extended stay at Childrens’ was helpful, including a care package from Vera’s Hope for Hearts as they embarked on their journey in the Cardiac Intensive Care Unit (CICU), family support dinners once a week, the family food pantry, breast pumps for use bedside and the “Beads of Courage” that marked each successful procedure Sienna faced and conquered. She is also thankful for the education they received about Sienna’s diagnosis and prognosis before she was even born.
“It’s scary and overwhelming to have your child separated from you immediately after childbirth,” Shannon said. “I don’t think I’ll ever forget the fear and anxiety I had walking behind the transport team as my newborn daughter was wheeled to the OR. Having prior knowledge about the possible CHD before delivery helped us feel empowered throughout Sienna’s cardiac journey by knowing what to expect and having plans in place. I remember being discharged a week after Sienna’s heart surgery and thinking wait maybe we should stay at Children’s a little longer—but I learned just how resilient babies are!”
Pediatric cardiologist James Nelson, MD, discharged Sienna from the Cardiac Acute Care Unit (CACU) and follows up with her annually at Children’s Healthcare of Atlanta Cardiology’s Center for Advanced Pediatrics clinic. Sienna is thriving, and she loves playing with her dog, Paisley, swinging on the swing set and being outside. She is set to become a big sister in October.
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