“She lives life to the fullest and is an inspiration to us.”
We are Josh and Amanda. We have two children: Jackson, 13, and Taylor, 10. Taylor is our Heart Warrior. At her two week check up with her pediatrician, he heard a heart murmur and referred her to see a cardiologist the next day at Sibley Heart Center Cardiology clinic in Gainesville. At the clinic, she was diagnosed with total anomalous pulmonary venous return and an atrial septal defect.
As a parent, it is very hard to hear that your child is sick and will need surgery. We had never even heard the term congenital heart defect. The Sibley staff at the Gainesville clinic was very kind and helpful, as we were devastated by the news that our newborn baby needed open heart surgery to survive. And not only that, but that she’d need to be flown by helicopter to Children’s Healthcare of Atlanta immediately. Our whole world turned upside down as we processed the information. Our son was only three and a half at the time, and we were blessed to have grandparents who were able to care for him while we focused on caring for Taylor. Everyone we were in contact with at Sibley and the hospital were so kind, reassuring and caring. They are some of the most compassionate doctors, nurses and staff that you will ever meet.
Four days after her diagnosis, Taylor had open heart surgery to repair her TAPVR and ASD. Since then, she has not needed any more surgeries, though she did need a heart cath when she was six years old. Now, she sees Dr. Lindsey yearly for follow up in Gainesville.
In the beginning, we were unsure what Taylor’s future would look like. One moment we will never forget is at her surgery checkup, the surgeon told us that Taylor looked great and was doing well. He said that we should, “Take her home and enjoy every minute.” That we have done! She is a miracle and has strengthened our faith and brought us so much joy. She is the strongest girl I know, and she lets nothing stop her. Encouraging, but honest, words from Taylor’s doctors, along with their positivity, helped us through some very difficult days. Our faith in God carried us through those days in the hospital and many days since.
Our advice to other parents going through a similar situation would be to stay positive. Soak in every moment with your child: yes, even the hard ones. Ask as many questions as you want, as many times as you want. When faced with such a difficult thing it can be hard to wrap your mind around everything. Every doctor and nurse Taylor had was so good at answering our questions, even if we’d already asked the same thing over and over.
Lean on family and friends and let them help in any way they can. Get to know the amazing family that you never knew existed, the Heart Family. You will be connected to them through difficult circumstances but they will be there for you when no one else can quite understand what you are going through. It will be helpful, too, as your child grows and they want to meet and get to know “other kids with special hearts like me,” as Taylor puts it. That is where the Kids at Heart program comes in. They are wonderful at connecting heart families with many fun things throughout the year.
Today, Taylor is a fun and active 10 year old! She is doing so well and has exceeded all we ever dreamed for her. She loves gymnastics and practices three days a week year round and competes at the Excel Gold level. She also loves softball and recently joined the running club at school. She loves to compete and be active. She doesn’t let having a special heart define her or hold her back (within doctor’s parameters, of course). She lives life to the fullest and is an inspiration to us.