Sydney was born in May 2011 and as with most first-time parents, we were both elated and completely terrified. She was delivered via C-section, so we only had a few moments with her before she was whisked away to the nursery. That turned out to be the one and only time we were able to hold her before her open-heart surgery. There was never any indication that Sydney had a heart problem during the pregnancy so the 24 hours after her birth can only be described as a time of utter chaos, confusion, and unbridled sorrow. Sydney was born with total anomalous pulmonary venous return (TAPVR) with an atrial septal defect (ASD) and patent ductus arteriosus (PDA). These terms were completely foreign to us and the thought of our baby undergoing, let alone surviving, open-heart surgery was beyond comprehension. Yet, Sydney was transferred to the nearby Children’s Hospital in the middle of the night and had open-heart surgery less than 24 hours after she was born. She underwent successful surgery to repair her heart and veins and although there were some scary moments during the recovery, Sydney was discharged after only two weeks and we were finally able to take her home. We were very fortunate to be near an amazing Heart Program and we are thankful every day for her surgeon and the incredible team of doctors, nurses, and staff that cared for her during her surgery and recovery.
By most measures, Sydney was a healthy and happy baby. She was hitting all of her developmental milestones and was even walking by ten months of age. We so desperately wanted to believe that surgery had cured her, but the reality is that no one is ever truly cured from congenital heart disease (CHD). Complications from her surgery started to arise and she became symptomatic within the first year. She underwent a second open-heart surgery in August 2012 and we fooled ourselves into thinking that this would truly be the last surgery she would need. However, it quickly became apparent that Sydney was just beginning her battle with CHD.
The next couple of years were met with what felt like endless tests and visits to the cardiologist until she was finally diagnosed with pulmonary vein stenosis (PVS). Sydney’s journey with CHD has taken us from coast to coast. Along the way, we have been fortunate to meet some of the most amazing and compassionate doctors and heart teams who have dedicated so much time and effort to helping Sydney get well. Since her second open-heart surgery, Sydney has undergone multiple cardiac catheterizations and had a stent placed in her pulmonary vein. We stopped keeping track of how many ECHOs, EKGs, and lung perfusion scans she’s undergone a long time ago. It’s part of her life and will always be her “normal.” Sydney will have a lifelong battle with CHD, but she is thriving. She is becoming more aware and self-conscious of her scars, but we hope they will serve as a reminder that she is a survivor who has overcome overwhelming odds and that she will always be our source of inspiration.
Read features Sydney’s Dad, Michael, has written for our organization.
Research Matters: Genetics and Genomics Research – Why It Matters – October 2016
Father’s Q&A Panel – June 2016
Research Matters: An Innovative Treatment for Plastic Bronchitis – What it Means – May 2016