Having cared for congenital heart disease patients most of her nursing career, Page Steadman, APN, Cardiovascular Surgery, never thought she would be a “heart mom.”
One in 110 – that was a statistic I often quoted to families I cared for. That is a child’s chance of being born with congenital heart disease, the most common birth defect in the world.
One in 2,000 – the chance of having a baby with tetralogy of Fallot (ToF), which is a combination of four heart defects.
One in 1 million – surely that’s the chance of a cardiovascular surgery nurse practitioner having a baby with tetralogy of Fallot.
As I lay on the hospital bed grasping my husband’s hand, we learned that the statistic I’d quoted so many times before was now our one baby. The fetal cardiologist was telling us it was our son who had tetralogy of Fallot. It was our son who would require open heart surgery, perhaps even more than one procedure. For us the statistic was one out of one, and, that was all that really mattered.
Caring for children who have tetralogy of Fallot, I could explain the surgery to my husband, my family and my friends. I knew what medications he would need. I knew to expect the breathing tube, the chest tubes, the wires and the machines. All of this gave me comfort, but I didn’t know how to look at all of that when it was attached to my baby. I knew that the surgery would last 6-8 hours, but I didn’t know how to pass that time when I was the one sitting in the waiting room.
I didn’t need someone to explain the medical aspect of what was to come. I needed someone to explain the personal aspect of having a child with congenital heart disease. I found myself craving interactions with fellow “heart moms” who had cried the same tears and smiled with same sighs of relief. Someone to tell me how to explain to my son that yes, that is a scar, but more than that, it is sign of courage, of strength and of a battle that was fought and won. It is a scar to always be proud of.
Maybe it was just ironic. Maybe it was kismet and the reason that I had decided to dedicate my career to caring for children who were born with congenital heart disease. I know those thoughts will stay just that, thoughts. One thing I do know is that this experience has been, and no doubt will continue to be, one full of learning.
Eliot’s surgery has come and gone. We are hopeful that it was the only surgery that he’ll need, but we know that he may need two or three, or more.
Our one son was given a second chance by one team, the Heart Center at Lurie Children’s and by the one and only, Carl Backer, MD. The team that had already given me so much – so many learning opportunities, fun memories, my career – had now given me the biggest gift of all, one for which I am eternally grateful: my son.