As told by my mommy:
On Monday, February 18, 2019, Tinley Jane Toner came quickly into the world. A few hours after a smooth delivery, Tinley’s nurse noticed the newborn’s oxygen levels were rather low, although she seemed fine. The nurse decided to take her to the NICU for a more in-depth checkup. An hour passed and it felt like forever. Finally, the doctors told us they were looking into a possible heart murmur. My husband and I weren’t too concerned when we heard this, as I, too, had a heart murmur when I was born. Another hour went by, and we called to the NICU to see what was going on. They told us that they would be sending a doctor up to our room to talk to us. When we saw two doctors walk in, we knew it wasn’t good news.
I don’t remember a lot from the conversation, except they said our daughter was very sick, she had a congenital heart condition, she was being kept alive by intravenous medicine, and she needed to be transported to another hospital immediately. My husband and I had 10 minutes to decide whether to send her to a hospital in Gainesville or Wolfson Children’s Hospital in Jacksonville. We ultimately chose Wolfson Children’s Hospital. That night, they took Tinley to Jacksonville by ambulance.
Tinley had her first open heart surgery at nine days old to begin the process of correcting pulmonary atresia with an intact ventricular septum. This means the valve that allows blood to flow from the heart to the lungs (pulmonary valve) doesn't work correctly. Instead of opening and closing to allow blood to travel from the heart to the lungs, a sheet of tissue or muscle blocks blood flow.
We were finally able to take her home just before she turned a month old. She had her second open heart surgery at four months old and we were able to leave a week after surgery. Tinley had her third and final surgery at three years old and we were able to go home two weeks after surgery.
Today she is a sassy and fun six-year-old with a sense of style and a joyful spirit. Tinley is the proud sister of a brother, Trey.
Thank you for your support of the American Heart Association! It means the world to us. Your donations allow doctors to research her condition and many others, helping babies and children like Tinley, as well as adults.
