In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).
Today, Rayna’s mom, Sara, will share her story.
Our Journey into the world of CHDs
In the summer of 2006, Tim and I found out that we would be parents to our second child and were beyond thrilled. We went to all our visits, and at each prenatal visit and ultrasound we waited to hear her heartbeat and were so excited to hear what we thought was a healthy heartbeat — little did we know.
Rayna was born February 16, 2007, at 39 weeks, “healthy” with some breathing and eating issues that were dismissed. We now know these issues were signs of her heart defect.
Fast forward four and a half years, and our little girl was showing signs of failure to thrive and becoming very frail with no answers. A visit to the pediatrician for strep throat uncovered a disturbing heart murmur that led us to many appointments and tests. One sunny afternoon, Tim and I were sitting in a place that we never even imagined we would be — a pediatric cardiologist office — and in the blink of an eye, our lives changed forever.
We were told that Rayna had total anomalous pulmonary venous return (TAPVR), a critical congenital heart defect which essentially meant her heart was not connected to her lungs correctly and, as she was currently in heat failure, she would require open-heart surgery to save her life. We were completely in disbelief — our little girl had been struggling and battling a CHD all this time.
On October 17, 2011, we entrusted our daughter’s life to the amazing medical team at Children’s Hospital of Wisconsin, and seven hours later she was given back to us full of tubes and wires; we were told just how lucky we were to still have her. Rayna’s defect is very difficult to find on an ultrasound, and many babies who have a heart defect like hers go home and never make it back to the hospital for care. Just the fact that she survived for so long was unheard of; once again we were shocked but knew how blessed we were.
We were told that a simple pulse oximetry test would have alerted doctors and nurses at birth that there was a problem with her heart. Our family worked hand in hand to make sure all babies in Wisconsin are pulse oximetry tested before going home from the hospital — it was important to us no child or family have a story like Rayna’s.
Rayna continues her care and all follow-up visits with her medical team at Children’s Hospital of Wisconsin, who have become some of the most treasured and important people in our lives.
Today, we are the very proud parents of a 4th grader who has not let her CHD slow her down and amazes us daily.
Looking for more resources for parents of children with congenital heart defects? Click here to learn more about the Pediatric Congenital Heart Association