My husband Justin and I were married in October 2011. Very soon after I became pregnant. We were overjoyed to be expecting our first child. Unfortunately, at our 8 week ultrasound there was no heartbeat. No matter when it is, losing a child, a life is an emotional trial. When the doctors cleared Justin and I to try for another baby we were blessed with another pregnancy in the early summer of 2012. On the day of our 20 week ultrasound we were deciding whether to find out if we were having a boy or a girl, not knowing the decisions we were going to be making very soon were much heavier. While the ultrasound tech went through all the checks, she seemed to have a hard time with an image. She excused herself to get the doctor. As he was searching for something he stopped to talk to us. There may be some shadows as the baby is not in the best position, but there also may be something wrong with the babies heart.” Immediately tears started to flow. All I could think is that we are going to lose this baby too.
The doctor assisted in getting us an appointment at The Children’s Hospital of Philadelphia the next day at the Fetal Diagnosis Center. After a long Echocardiogram of the babies heart we met with the team and they confirmed that our baby was going to born with a very severe single ventricle heart defect. Bella would be born with Hypoplastic Left Heart Syndrome, without the left side of her heart. They told us the decision was ours but there was hope. They have a plan for babies born with HLHS. She could have a series of 3 open heart surgeries to repair her heart defect. My husband and I went home knowing there were no promises, but we had to try for her, we had to give her a chance. CHOP gave us the hope we needed to move forward.
Every day we look at our beautiful 5 year old sassy, sweet and funny daughter and feel overwhelmed. We are amazingly blessed to have her and we want her to have every chance to live a long, happy life. Our nonprofit, Beats for Bella, has been working hard for 5 years to bring more awareness to the prevalence of Congenital Heart Defects. 40,000 babies are born every year with a Congenital Heart Defect. CHD is the #1 birth defect in the world. Bella is 1 of the 4,344 babies born annually with Hypoplastic Left Heart Syndrome. We have been working to contribute to research projects at The Children’s Hospital of Philadelphia, The Mayo Clinic HLHS Program, and Dr. Rodefeld’s Fontan Blood Pump. We are small but we are mighty and our community has rallied around Bella and our efforts. We have found a new sense of obligation, digging deep into WHY we do what we do. Everyday with Bella is a blessing, but that does not change the fact that if research and treatments do not advance her heart will fail. Bella’s heart will fail someday if we do not do something, if we do not do our part to support the institutions and doctors who are conducting the groundbreaking work and research to save her life, we are failing her. We would also failing every child fighting everyday to live.
Through this journey we have seen sweet babies leave their families too soon. This world fills us with so much joy and breaks our hearts in the same day. Beats for Bella has a responsibility to do our part, not just for Bella, but for Xavier, for Lily, for Ganyn, for Blake, for Danny, for Gabe, and for Hayden. These are only a few of special children we have met along the way. Their families celebrate and grieve just like ours. We have had to grieve a life we will never have, a life of “normalcy” that will never exist for Bella and our family. We made the decision for Bella and our family to not just walk this road, but to brave the storms and make the largest impact we can, to empower and give hope to new families just beginning this journey.
