Reagan’s Story
Reagan (affectionately known as RaeRae) was diagnosed with a cleft lip and a critical CHD; right-dominant unbalanced atrioventricular canal defect. Atrioventricular (AV) canal defects are a group of congenital cardiac defects involving the AV septum and AV mitral and tricuspid valves. Definition and management of this diagnosis remains challenging because unbalance involves a spectrum of left heart underdevelopment, which is why Rae’s diagnosis is treated as a variant of Hypoplastic Left Heart Syndrome (HLHS). HLHS is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart is underdeveloped and does not form correctly.
Reagan has an older sister and 2 older brothers, all who are heart healthy. Receiving this diagnosis was quite a shock for the family. Our beautiful Reagan was born on May 2nd, 2019 at 40 weeks gestation. At 7 days old, Reagan had her first open heart surgery, a modified Norwood. She was hospitalized at Phoenix Children’s Hospital on and off until October of 2019, when she was taken to Children’s Hospital Los Angeles for her 2nd open heart surgery, the Glenn procedure. She was accepted into the Mayo Clinic clinical trial which consists of injecting her heart with stem cells harvested from her cord blood at birth. Unfortunately, Reagan suffered many complications from the surgery and after nearly 5 weeks of fighting hard for her life, she became our beloved angel at 6½ months old. Our family is heartbroken.
As we try to move forward in this new normal, we are determined to honor Reagan’s legacy. Although she was only with us for 6½ short months, she was the strongest, bravest, happiest baby despite everything she endured. She always had a smile for her mommy and daddy, loved listening to music, loved laying on soft pillows with a soft blanket, and interacted with her big sister and brothers who loved her unconditionally!
Unfortunately, as most people are – we were unaware of CHD’s and what these babies must go through in order for a chance at life. In our journey, we learned so much from our heart warrior along the way. We had the support of our extended family and renowned children’s hospitals available to us. Some families are not so lucky. Our mission is to be able to help families and their heart warriors in their journeys, as well as provide funding for the amazing doctors and nurses at Phoenix Children’s Hospital Heart Center. We were fortunate to have incredible teams of doctors, nurses, therapists, nutritionists, and numerous support staff between Phoenix Children’s Hospital, and Children’s Hospital Los Angeles. These are the heroes as well.
Thank you for reading our story. We hope this inspires you to help us honor Rae’s life and join in our cause to fight this horrible heart defect.
