Hayes’ story began unexpectedly. At 35 weeks into my twin pregnancy, I had to undergo an emergency C-section, and from that moment, everything shifted. What was meant to be a joyful start quickly turned into a daunting struggle. Just hours after birth, Hayes was diagnosed with a congenital heart defect that would change his life forever. He was identified as having Truncus Arteriosus with an Interrupted Aortic Arch, a critical condition that necessitated immediate intervention for survival.
Our neonatologist, alarmed by Hayes’ condition, requested an echocardiogram. The findings were heartbreaking. Hayes’ heart was severely malformed, and the blood flow to his body was at risk. The medical team recognized that he would need surgery to survive, but he was too small and delicate at just five pounds to endure such a complex operation. Nevertheless, the doctors were committed to giving him the best chance possible.
Shortly after, Hayes was airlifted to the Mayo Clinic in Rochester, where specialists confirmed the diagnosis of Truncus Arteriosus Type 4 with an Interrupted Aortic Arch. It was a diagnosis no parent wishes to hear, but the medical team remained hopeful. They believed that if Hayes could grow stronger, he might have a chance at life. They decided to take a calculated risk by placing flow restrictors in his pulmonary arteries to slow blood flow, allowing his heart and body time to develop. This approach provided him a fighting chance, though it was uncertain how long he could endure these conditions.
In the weeks that followed, Hayes gained strength. At eight pounds and just a month and a half old, he was finally ready for his first open-heart surgery. We could only hope and pray for his survival. The surgery lasted several hours, and during the operation, doctors discovered unexpected complications. A CT scan revealed that eight areas of his heart required repair. The complexity of his condition was daunting, but the medical team was resolute in giving him the best opportunity for recovery.
The surgery was extensive—lasting nine hours—but when it concluded, Hayes was transformed. He had undergone a significant change, and while the future remained uncertain, we could finally exhale. His heart had been repaired, and he had a fighting chance. As we gazed at our tiny son, still a newborn, we felt a profound sense of wonder. Hayes had already defied the expectations of many doctors. His strength and will to live were beyond what we had ever imagined.
However, Hayes’ journey was far from over. Over the next few years, he blossomed into a healthy, energetic toddler, brimming with life. He was just like any other 2-year-old—curious, playful, and joyful. Yet, in May 2025, we received news that Hayes would require another surgery. His latest echocardiogram indicated that the conduit placed in his heart during the first surgery was showing signs of high pressure, signaling it was time for a replacement.
We were familiar with this uncertainty. After all that Hayes had endured, this news served as a reminder that his journey was ongoing. On October 10th, Hayes underwent his second open-heart surgery to replace the RV–PA conduit. The procedure was intricate, but the recovery was nothing short of miraculous. Within just five days, Hayes was discharged, showcasing his resilience and determination. Once again, Hayes had defied the odds.
Although Hayes is thriving, we understand that this will not be his last surgery. As he grows, the conduit will need to be upsized, and we are ready for the challenges that lie ahead. However, after all he has overcome, we are confident that Hayes will continue to fight with the same strength and courage he has displayed from the very beginning.
Hayes’ story transcends heart surgeries and medical interventions; it embodies resilience, hope, and an unwavering will to live. His journey serves as a powerful reminder of the strength of the human spirit. Against all odds, Hayes has demonstrated that anything is achievable with determination. Every step of the way, he has proven to be a warrior. Though small in stature, his heart is immense.
We are in awe of our little boy, who has already achieved so much in his brief life. Hayes has surpassed the expectations of the medical community, and with each surgery and recovery, he continues to show that no challenge is too great for him to conquer. We are incredibly proud of him, and as his parents, we will remain by his side, supporting him through every obstacle.
Looking forward, we recognize that Hayes’ journey is far from complete, but we are filled with hope. Each day, he inspires us to be stronger, to confront challenges head-on, and to persevere. Hayes has already demonstrated the power of the human heart, and we are confident that he will continue to inspire everyone he encounters. Hayes is not merely a heart warrior—he is a testament that love, hope, and determination can triumph over even the most daunting odds.
We love you, Hayes. Your fight is our fight, and we will be with you every step of the way.
