Sometimes we don’t think of how early heart disease can begin, but often babies are born with heart conditions that can affect them for life. My daughter is one of those babies.
Macy was born seven weeks early, and it wasn’t until she was two days old that we learned of her heart defect. We were completely shaken to learn that our only baby was facing a trial that we couldn’t take away. As it turned out, she had six holes in her heart and a valve that was much too narrow for blood to pump through properly.
She was transferred to a children’s hospital three hours from our home, and we were shoved into a world we hadn’t prepared to live in. Beeping of monitors, IVs, feeding tubes, tests, daily weighing, scrubbing our hands for two minutes before we could hold her, changing itty bitty diapers, and listening to specialists we hadn’t known existed became our definition of normal for three weeks.
When we came home, a new routine began. There were many weeks where we had a different doctor’s appointment every day. Once a month, a visit to the cardiologist was in our schedule… until our girl was 10 months old and her open-heart surgery became a dreaded day on our calendar.
I thought signing my name on a slip of paper to allow a surgeon to operate major surgery on my child was the hardest thing I would ever face. But handing her over to them was even worse. I don’t remember how long I cried in that room, but my chest ached like part of my own heart was missing. When we made it to the waiting room and the nurse came in to tell us that surgery had begun, it hit me all over again. The room began to spin and I ran across the hall to the bathroom while my husband came in after me to physically hold me up. I was crying so hard I couldn’t breathe and beating my fists against the concrete wall brought no relief to my agony. I felt so helpless that she was out of my hands. That the person I carried inside myself and would give my own life to save, was facing something I couldn’t fix.
It was a rough recovery period while we jumped more hurdles than we ever imagined. Macy coded the morning after the surgery, had major blood pressure issues, withdrawals from her medicine, and a collapsed lung. I think I prayed more in those three weeks than I ever had in my entire life. I didn’t understand why she faced the things she had, but I knew that God had a reason.
Today, I know that going through everything we did made us stronger. If God had healed her in a supernatural way, I could’ve easily forgotten how blessed we were. I think seeing the scar on her chest every day is a visual reminder for me to never take her health for granted. To know that God has a greater plan that we do. And even though I have to check the box that says my girl has a history of heart conditions, blood transfusions, and surgeries, I wouldn’t change it for anything in this world.
She is perfect to me and her battle scars are something to be very proud of. And today, I am grateful for them.
Trish Brammell resides in Kentucky with her husband Chad, their daughter Macy, and their boxer, Ali. She enjoys organizing, singing along with the radio, and watching old movies. She firmly believes that a good laugh or cry is like medicine to the soul. As a passionate advocate for her special needs daughter, she considers parenthood to be one of life’s most difficult and gratifying honors. She has learned that every day may not always be wonderful, but there is always something wonderful in every day.