By: Don Mayack
4 years ago my wife and I found out we were going to have a baby. As expected we knew our lives would be changed forever. But at that moment we didn’t realize just how much they would change.
Shortly after learning we were expecting, we learned that our unborn baby had a congenital heart defect. Tetralogy of Fallot (TOF) to be exact. Our world was turned upside down. We went from floating on cloud 9 to researching and learning as much as we could about this heart defect. We soon discovered that our baby would need surgery, and potentially multiple surgeries, within the first year of life. What we also learned was that there are many different congenital heart defects, many that do not have the same outcome as TOF. Many families who learn of their unborn baby’s defect, soon learn there is nothing that can be done. We were grateful to learn that we were the fortunate ones. That our baby would be born at a time where medical technology was at a point where a child with her condition would and should have a good chance at a normal life.
We went to the hospital to have our baby like anyone else, except as soon as she was born she was rushed away to be examined by a large team of doctors who were intently waiting to check her out. That examination, which only lasted maybe 10 minutes, seemed like hours, as we were nervous of what the outcome of this exam would lead to. We read stories of babies immediately being taken away to be monitored and prepped for surgery within days. For us, this was not the case. Aria, our new baby girl, appeared to be healthy. Doctors claimed had they not already known about her defect they wouldn’t have discovered it with the tests they ran.
But Aria’s story was just beginning. At 5 weeks old she had two Tet Spells (A Tet spell is when the baby gets very upset and has deep blue skin, nails lips, and shortness of breath). We quickly made her a cardiology appointment and would be seen a few days later. At that appointment, a Friday evening, we learned Aria’s health was declining rapidly and that she would need life-saving surgery ASAP. Surgery was scheduled for Monday morning and we were admitted to the hospital that Friday night for monitoring.
That weekend was and still is hard to think about. We spent every minute by Aria’s side, taking in all the time we could with our new baby and informing family and friends of what was going to be happening with our 6-week old daughter - open heart surgery. Aria made it through surgery like a champ; at 6 weeks old, we knew who our hero was. Aria went on to have a heart Cath done at 9 months and her second open heart surgery at 10 months.
Today, Aria is a thriving almost 4-year-old and you would never tell by looking at her (besides the “booboo” on her chest, as she proudly calls it) that she has a heart condition. She loves gymnastics, preschool, jumping on the trampoline, and playing outside. We are so grateful for Aria’s doctors, nurses, and researchers who have made this possible.
However, there is one thing always on our mind. Aria’s pulmonary valve was basically shredded during her second open heart surgery to remove stenosis to allow a more proper blood flow. This means that at some point, Aria will need another open heart surgery. We are hopeful and praying that technology will make this procedure less invasive and Aria will not have to undergo another intensive procedure like open heart surgery.
This experience gave us a new perspective on things. We both knew right away we needed to do what we could to help. We first learned about The Children’s Heart Foundation at the Congenital Heart Walk. When Aria was just 3 weeks old, we attended the walk and due to her health at that time, we were hesitant to help. But I believe we both knew we wanted to direct our efforts towards The Children’s Heart Foundation and their critical mission of funding congenital heart defect research. It was after our second walk a year later that we jumped in and started volunteering. The Children’s Heart Foundation and the community it touches are unbelievable. We have met many friends who share similar stories and it’s amazing to feel a sense of belonging. Our goal is to educate people and help raise funds for life-saving congenital heart defect research.