When Leo was born on March 21, 2020, his parents were filled with joy. After a relatively uneventful pregnancy, everything seemed to be going well, but shortly after his birth, their world was turned upside down. Despite a natural delivery, Leo’s hands and feet were unnervingly blue, which at first seemed like a minor concern. However, a simple pulse oximetry test, usually a routine check, revealed a shocking reality: his oxygen levels were dangerously low, reading just 78%. This was the beginning of an unexpected and heartbreaking journey that would change their lives forever.
As the midwife quickly sought help, a team of doctors arrived and immediately administered oxygen to Leo, but it was clear something was seriously wrong. Leo was rushed to the neonatal unit, where the doctors began working to assess his condition. Hours later, the cardiologist delivered a devastating diagnosis: Leo had a complex heart condition called pulmonary atresia, combined with a ventricular septal defect (VSD), a hole in his heart. His only chance of survival was immediate surgery.
What followed was a series of life-saving interventions. Leo was ventilated and placed on prostin to keep his duct open, a critical part of his heart’s function. A CT scan was conducted, and a surgery was attempted to stent the duct, but it was unsuccessful. As the duct began to close, the doctors moved forward with the next step—open heart surgery. At just three days old, Leo underwent a Sano shunt procedure to help the blood flow from his heart to his lungs, but complications soon arose. The shunt blocked, and his body wasn’t able to properly circulate blood.
The situation grew dire, and Leo was placed on ECMO (life support) to give his body time to recover. His parents were told that their son was gravely ill, but the medical team would continue doing everything they could to save him. It was a moment of fear and uncertainty, but Leo’s fight was far from over.
After a few days, the medical team was able to perform another cardiac catheter procedure that successfully stented the Sano shunt. This was a turning point in Leo’s journey. After 10 days on ECMO, Leo came off the life support, marking a major milestone in his recovery. He continued to improve, and at two weeks old, he was extubated and began breathing on his own with the support of CPAP (continuous positive airway pressure). Despite these improvements, Leo still faced many challenges, including severe reflux and difficulties with feeding, which led to an NG tube being inserted.
Soon after, Leo developed an infection in his chest, requiring multiple rounds of medication to stabilize him. But with each passing day, his strength grew. By four weeks old, Leo was finally able to go home, though his journey was far from over. He was placed on home monitoring until he reached 11 months old, with his family remaining vigilant as they navigated his ongoing care and recovery.
As Leo grew, it became apparent that he would need further surgery. In February of the following year, his oxygen saturation levels began to drop again, prompting another visit to the hospital. A cardiac catheter procedure revealed that Leo had developed a condition called aortopulmonary collateral arteries (MAPCAs), which required immediate attention. His Sano shunt was no longer adequate, and a larger conduit was needed to help improve his oxygen levels.
In February 2021, Leo underwent his second open-heart surgery to address the complications. Although there were difficulties in repairing the VSD due to weakness in his heart, the surgery was a crucial step forward. Today, Leo continues to battle complications such as shortness of breath, fatigue, severe reflux, and feeding struggles, but despite all of these challenges, he is doing remarkably well considering what he’s been through.
Leo’s parents, Emma and her partner, never anticipated that their son would be born with such severe congenital heart defects. The uncertainty of not knowing what to expect has been one of the hardest aspects of their journey. However, their determination to help Leo survive and thrive has been nothing short of extraordinary. They are beyond grateful for every moment they get to spend with their son, and each day they cherish his strength and resilience.
The scariest part of Leo’s journey, Emma says, is knowing that without the pulse oximetry test administered just hours after his birth, they would have gone home, and Leo could have died. It was that test—a simple, quick procedure—that started the chain of events that saved his life. This reminder of the fragility of life has inspired Emma and her partner to raise awareness about the importance of these early tests for newborns.
Despite all the hardships Leo has faced, his journey continues to be one of hope, strength, and love. His story is a testament to the resilience of the human spirit, even in the smallest bodies. Every surgery, every procedure, and every moment of recovery is a victory in itself.
Through it all, Leo’s family remains hopeful, knowing that every step forward—no matter how small—is a step closer to a healthier future for their son. As they continue to navigate the complexities of his care, they hold onto the belief that with love, faith, and the support of their medical team, Leo can continue to defy the odds and live a life filled with possibilities.
Leo’s story is not just about survival—it’s about the power of resilience, the strength of family, and the unbreakable bond between a parent and their child. Each day he fights is a reminder that miracles can happen, and that love is the most powerful force in the world.