Theo's Heartbeat Heroes12 Members
We Walk to Save Lives!
2024 Metro St. Louis Heart Walk
Theo's Heartbeat Heroes
Our journey began with Theo, our first babe, who, during the 20-week scan, brought us face to face with a tough diagnosis—Hypoplastic Left Heart Syndrome (HLHS) a rare congenital heart defect where the left ventricle is severly underdeveloped. Although congenital heart defects affect 1 in 100 babies, only 1 in every 3,841 babies receives a diagnosis of HLHS.
This diagnosis meant a series of three, staged surgeries to reroute blood flow, giving THeo's heart a fighting chance. The first surgery, the Norwood procedure, was performed when he was just five days old, with a 60% survival rate for healthy babies. At four months, Theo underwent the Glenn procedure, making remarkable strides toward a happy, energetic childhood.
However, life had more challenges in store. After a heart scan early in 2023, we found that Theo had a restricted atrial septum, the opening between the two upper chambers of the heart. The initial intervention was a cardiac catheter procedure that alleviated some of the stress on Theo's body, but ultimately, another open heart surgery was needed to ensure long-term succeess.
After surgery, we discovered Theo had experienced a stroke during the procedure. As a parent, nothing is worse than watching your fully mobile toddler have to learn to walk again. But Theo never felt sorry for himself and was determined to get back to his spunky self. Within three weeks, we were amazed to see him walking on his own. MOnth later, although Theo is still working regularly with therapists, he's not letting anything slow him down.
These kids become fighters and heroes. Theo's determination never wavered. While we navigate the nervous anticipation of upcoming appointments and surgeries, we hold onto hope for the future. Theo's birth came at a pivotal time, as advancements in medical science now offer hope where HLHS was once the end to the story; it is now the beginning.
Our gratitude goes to organizations like the American Heart Association, whose support fuels research, innovation, and a collective hope for families like ours. Your contributions not only help extend the lives of these courageous children but also provide a beacon of hope for their futures.