A Lifelong Fighter with a Heart of Gold
Lena Romano was born in 1983 with complex congenital heart defects, including Hypoplastic Left Heart Syndrome (HLHS) and Tetralogy of Fallot. Her survival was nothing short of miraculous. Prior to 1982, most babies born with HLHS faced an almost certain fate—there was no established treatment plan to correct the severe underdevelopment of the heart’s left side, which led to oxygen deprivation and earned them the name “blue babies.” Without intervention, these children rarely survived beyond infancy.
Lena’s chance at life came thanks to the groundbreaking Norwood procedure, pioneered by Dr. William Norwood at the Children’s Hospital of Philadelphia (CHOP). This innovative, staged surgical approach revolutionized care for children with HLHS, offering a lifeline where none had previously existed. Dr. Norwood’s expertise and pioneering work gave Lena an opportunity not only to survive but also to live a full and vibrant life. Lena’s family remained forever grateful for this medical breakthrough and the skilled care that made it possible.
Throughout her life, Lena lived with Fontan circulation, the final stage of the Norwood procedure, designed to optimize blood flow in single-ventricle hearts. This solution extended her life for decades but was never a cure. As Lena approached her 40th birthday, the limitations of her heart’s structure began to take their toll. She was placed on the transplant list at Vanderbilt University Medical Center, a leader in heart transplantation, where she waited with hope and determination for a new chance at life.
On October 7, 2023, Lena received the call that a donor heart was available. Her family felt immense gratitude for the donor’s family, whose selfless act of generosity gave hope in the midst of their own profound loss. Hours before her surgery, Lena made the heartfelt decision to accept Jesus Christ as her Lord and Savior, a moment that brought her peace and comfort. Her family finds profound solace in knowing Lena embraced her faith, and it serves as a source of strength during their grief. Tragically, Lena passed away due to complications during the surgery. Although her family was heartbroken, they take comfort in knowing that her life and legacy continue to inspire others. Lena’s journey was a testament to resilience, love, and the transformative power of medical innovation, leaving behind a legacy of courage, hope, and faith.
Inspiring the HLHS Community
Throughout her life, Lena became a beacon of hope for families navigating HLHS and other congenital heart defects. She openly shared her story on blogs and forums, where mothers, fathers, and children would reach out to her for advice, support, and encouragement. Her resilience, strength, and positive spirit inspired families across the globe. Lena offered more than words—she provided hope and proof that life, even with HLHS, could be vibrant and meaningful.
As one of the longest-living individuals with HLHS, Lena was not only a source of inspiration but also a vital resource for others. Families and even healthcare providers looked to her for insight and guidance. Health systems followed her progress to better understand the complexities of her unique heart circulation and how her care and experiences could inform treatments for future patients. Lena’s life served as a living example of medical possibilities, bridging the gap between patients and providers in the fight against congenital heart defects.
Even in her passing, Lena continued to contribute to medical knowledge. The care team that performed her heart transplant learned invaluable lessons from her complex case, insights that could benefit future HLHS patients undergoing transplants. Lena’s life and her journey didn’t end in vain; she left a legacy of hope, learning, and inspiration that will continue to shape care for others facing similar challenges.
Lena’s big heart extended to anyone in need. She took the time to answer questions, calm fears, and share her experiences. Whether it was a parent looking for guidance or a young person seeking reassurance, Lena made each person feel seen, heard, and uplifted. Her willingness to give back and share her journey left an indelible mark on the HLHS community and beyond.
A Life of Love and Purpose
Lena’s journey was deeply rooted in the love and support of her family. She graduated from Old Forge High School in June 2002 before pursuing her passion for education at Temple University, where she earned her degree in 2006. Her dedication to working with children shaped her career and reflected her caring and compassionate nature.
In 2018, Lena and her family relocated to Charleston, South Carolina, embracing a fresh chapter together. It was there that Lena’s life took an exciting new direction—she met Josh Wilbanks, and their connection quickly grew into a loving partnership. Together, they built a life filled with laughter, adventure, and mutual support, and Lena wholeheartedly embraced her role as stepmother to Josh’s daughters, Bella and Kate.
Lena’s parents, Patty and Dominick, were her steadfast supporters throughout her life. Whether Patty was driving hours to be by Lena’s side during a college illness or attending every medical appointment, or Dominick was offering his unwavering support and love, their care and devotion never wavered. Their presence was a constant source of strength, encouragement, and unconditional love.
Lena also shared a unique bond with her sister, Natalie. As both an advocate and protector, Natalie ensured Lena received the care and attention she deserved, navigating challenges with determination and loyalty. Their relationship was built on trust, respect, and a fierce commitment to one another.
In her work as a nanny, Lena’s passion for children shone brightly. She poured her heart into nurturing and supporting each child she cared for, leaving a lasting impact on families she worked with. Her creativity extended beyond her professional life to her love of music. As the lead vocalist of the band “Dashboard Mary,” Lena’s voice was powerful, captivating, and filled with passion, reflecting her zest for life.
Lena was a dedicated aunt to her nieces and nephews—Lila, Louis, Greta, and Savino—and made each of them feel truly special. Her warmth, sense of humor, and positive energy inspired those around her to approach life with gratitude and resilience.
Whether she was caring for children, performing on stage, or spending time with loved ones, Lena lived her life fully and wholeheartedly, leaving an enduring legacy of love, strength, and compassion.
“What we have once enjoyed deeply we can never lose. All that we love deeply becomes a part of us.”
– Helen Keller
