From the very beginning, Edison’s life has been a story of extraordinary strength, deep love, and unwavering resilience. Long before he took his first breath, his journey was already marked by challenges that would test not only his tiny heart, but also the hearts of everyone who loved him. Born with Hypoplastic Left Heart Syndrome (HLHS), a rare and complex congenital heart condition, Edison entered the world facing obstacles that most people will never have to endure. Yet, his story is not defined by fear or limitation—it is defined by hope, determination, and the powerful bond between a child and his family.
Edison’s journey began in a moment that changed everything. During what was meant to be a routine 20-week ultrasound, Navarna and her partner were confronted with devastating news. Their unborn baby had been diagnosed with HLHS, a condition in which the left side of the heart does not develop properly. In a healthy heart, the left side is responsible for pumping oxygen-rich blood to the body. In Edison’s case, this vital function would be severely impaired, meaning his heart alone would not be able to support his body without immediate and ongoing medical intervention.
For Navarna, a first-time mother, the diagnosis felt overwhelming. Suddenly, her world was filled with complex medical terms, difficult decisions, and frightening uncertainties. Dreams of a simple, uncomplicated pregnancy were replaced with hospital visits, specialist consultations, and constant worry about what the future might hold. Yet, amid the fear and confusion, one thing became clear: Edison was deeply loved, and his parents were determined to fight for him with everything they had. They chose hope. They chose courage. And they chose to believe that with the right care, their son could not only survive—but truly live.
As if facing a life-threatening heart condition were not enough, Edison’s arrival came during one of the most challenging periods in recent history: the global COVID-19 pandemic. Hospitals were under immense pressure, visitation was limited, and strict safety protocols changed the way families could support one another. The world felt uncertain and isolating, and for Navarna, this added another layer of emotional strain to an already overwhelming situation.
Edison was born at Leicester Royal Infirmary, a beautiful and bittersweet moment for his family. While his birth was a moment of joy, it was also the beginning of an intense medical journey. Almost immediately, Edison was rushed to the Neonatal Intensive Care Unit (NICU), intubated, and then transferred to Glenfield Hospital, where a specialized team was ready to provide the advanced cardiac care he desperately needed. For his parents, watching their newborn surrounded by machines and medical staff was heartbreaking—but it was also a reminder that he was in the best possible place to fight for his life.
At just three days old, Edison underwent his first open-heart surgery: the Norwood Procedure with ASD (Atrial Septal Defect) repair. This complex and delicate operation is often the first of several surgeries required for children with HLHS. It was a critical step, one that would help stabilize Edison’s circulation and give his body a chance to grow stronger. Handing over their tiny son to a surgical team was one of the hardest moments Navarna and her partner would ever face. They waited, holding onto hope, praying for good news.
When the surgery was successfully completed, it felt like a small miracle. But recovery was not easy. The following 16 days in intensive care were filled with emotional highs and lows. Every monitor beep, every medical update, every small change in Edison’s condition carried immense weight. Still, through it all, Edison showed remarkable strength. He fought quietly and bravely, proving that even the smallest heart can hold enormous courage. Eventually, the day came when he was strong enough to go home—a moment filled with relief, gratitude, and cautious optimism.
Because of the pandemic and Edison’s fragile health, the family made the difficult decision to shield at home. This meant isolation, limited contact with loved ones, and constant vigilance to protect Edison from infection. For a new mother, this period was especially challenging. The loneliness, the fear, and the responsibility of caring for a medically fragile baby could have been overwhelming. Yet Navarna remained focused on what mattered most: keeping Edison safe, loved, and supported.
As months passed, attention turned to Edison’s next major milestone—the Glenn Procedure. This second open-heart surgery would further improve his circulation and support his growing body. However, pandemic-related delays meant more waiting, more uncertainty, and more emotional strain. Each day felt heavy with anticipation and concern, but also with hope that this next step would bring Edison closer to a stronger, healthier future.
When the call finally came to schedule the surgery at Birmingham Children’s Hospital, emotions ran high. Due to COVID-19 restrictions, only Navarna was allowed to be with Edison. Being separated from her partner during such a critical time was incredibly difficult, adding to the emotional weight of the experience. On the day of the surgery, fear and faith existed side by side. Letting go of Edison’s hand and watching him be taken into surgery required a level of strength that only a parent’s love can give.
After what felt like endless hours, the news arrived: Edison had come through the surgery successfully. Relief washed over Navarna, though exhaustion and emotion followed closely behind. Recovery was once again a journey of patience and perseverance. Even in pain and under heavy sedation, Edison continued to show the quiet strength that had defined his life from the very beginning.
Today, as Edison approaches his second birthday, his progress is nothing short of remarkable. While he still requires ongoing care, monitoring, and may face future surgeries, he is thriving in ways that once felt uncertain. Every smile, every laugh, every new milestone is a victory—a reminder of how far he has come and how powerful love and modern medicine can be.
Edison’s story is not just about a heart condition. It is about resilience in the face of fear. It is about parents who refuse to give up. It is about a little boy whose heart, though physically challenged, is filled with extraordinary strength. His journey continues, but already, his life stands as a powerful testament to hope, courage, and the unbreakable bond of family.
With every new day, Navarna and her family look forward with gratitude and determination. They know challenges may still lie ahead, but they also know they are not facing them alone. Edison’s journey is far from over—but one thing is certain: his heart, and the love that surrounds him, will continue to carry him forward, one brave beat at a time.