Reagan (affectionately known as our RaeRae) was diagnosed with a cleft lip, and a right-dominant unbalanced atrioventricular canal defect, which is classified as a critical congenital heart defect.  Atrioventricular (AV) canal defects are a group of defects involving the AV septum and AV mitral and tricuspid valves.  Definition and management of this diagnosis remain challenging because unbalance consists of a spectrum of left heart underdevelopment, which is why her diagnosis is treated as a variant of Hypoplastic Left Heart Syndrome (HLHS).  HLHS is a 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 two older brothers, all heart healthy.  Receiving this diagnosis was unexpected and quite a shock for the family. Our beautiful Reagan was born on May 2, 2019.  Reagan had her first open heart surgery at seven days old, a modified Norwood.  She was hospitalized at Phoenix Children’s Hospital on and off until October 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 consisted of injecting her heart with stem cells harvested from her cord blood at birth.  Unfortunately, Reagan suffered many complications from that surgery, and after nearly five weeks of fighting hard for her life, she became our beloved angel at 6½ months old.  Our family remains devastated and heartbroken.

 

We are determined to honor Reagan's legacy as we try to move forward without our precious child.  Our family learned so much from our little heart warrior.  Although she was only with us for 6½ short months, she was the strongest, bravest, happiest baby despite everything she endured.  The gentle touch and voice of her mama always soothed her.  She returned a smile when she received a smile or a gentle kiss.  She loved listening to music, laying on soft pillows with a soft blanket, and interacting with her big sister and brothers, who loved her unconditionally!  She showed her love through her big smile, her soft sounds, and her bright eyes regardless of the circumstance.  

 

Unfortunately, as most people are – we were unaware of CHD and what these babies must go through for a chance at life.  We were fortunate to have the support of our extended family and renowned children’s hospitals available to us.  Some families are not so lucky.  The cost of medical expenses, travel, accommodations, and other related costs can quickly become overwhelming for families who are already facing incomprehensible emotional stress.  It is our hope that by providing financial assistance, we can help reduce the added stress they face and enable them to focus on their child and advocate for their care. 

 

Thank you for reading our story.  No child deserves this diagnosis.  We hope this inspires you to help us honor Reagan’s life in a significant way and join in our cause to create awareness and support those affected by these horrible defects.