“We got his diagnosis the day after he was born… that was the day our lives changed forever.”
Titan was born with Tetralogy of Fallot (TOF). He has had multiple medical interventions, including open heart surgery, and he’s not even one year old. He is currently almost 9 months old but has already experienced so much. His entire family’s life has been changed. “CHD doesn’t only affect the person who has it but it also affects everyone who loves that person,” Titan’s mother, Sarah, said. “We didn’t choose this life … it chose us. It’s like being forced into a club you didn’t ask to join or be in. Life has a way of making you grateful for the small things.”
Sarah was already a mom of four. This new life, her fifth child, changed the way she thought about things. Small things that didn’t used to seem so big now were. “With my first four babies, I didn’t give much thought to how much of a blessing it was just to be able to take home a fully healthy baby, it wasn’t a second thought about the fact that it could have been a totally different reality for me,” Sarah said. “This experience has given me a joy and thankfulness that I didn’t have before. I’ve come out of this a new being, with a new perspective, more gratitude, more empathy, a shift in my heart. My faith is slowly turning my trauma into healing and allowing flowers to grow in all the places darkness has touched…”
Sarah and her family continue on, with hope for a bright future. They are strong in their faith and are grateful for everyday with Titan and each other. “I’m happy to tell you that it wasn’t the end but the beginning of something beautiful. I trace Titan’s scar with my finger and I lay my head on his chest to hear his new heartbeat. I am overcome with some much thankfulness. Sometimes the best and worst thing that will ever happen to you will ironically be the same thing.”
As Titan continues to grow, he will need continued care. More cardiologist visits, more medical interventions, one thing to the next. But would it be amazing for all that to stop? There is currently no cure for TOF or any CHD. Project Heart wants that statement to change. We are on a mission to cure CHD to give Titan and others like him, a life without limits — a life they deserve.