Quincy’s Journey: A Story of Hope, Love, and Resilience

Trusting the Plan

Our journey began when Quincy was still in the womb, between 19-22 weeks prenatal. The diagnosis of HLHS, a rare congenital heart defect, along with single ventricle and pulmonary atresia, was a daunting revelation, but it was met with unwavering love and determination. Alongside HLHS, Quincy had a hiatal hernia and potential intestinal malrotation, adding layers of complexity to his condition. Yet, from the very beginning, Quincy had shown incredible resilience.

We found hope and confidence in the exceptional medical team at Oregon Health and Science University. The doctors and specialists worked tirelessly to develop a comprehensive surgical plan aimed at addressing Quincy's unique needs. Their expertise and dedication reassured us that Quincy was in the best hands possible. We felt a profound sense of trust in their ability to guide us through the early stages of his life, focusing on his growth and development.

The plan included intricate procedures and careful monitoring, all designed to give Quincy the best chance at a normal childhood. Every step of the way, the medical team kept us informed, supported, and hopeful. Their compassion and commitment to Quincy's well-being gave us the strength to face each day with optimism.

Arrival of a Warrior

On August 4, 2023, at 5:38 AM, Quincy made his grand entrance into the world, weighing 6 pounds 2 ounces and measuring 20 3/4 inches. His arrival was met with joy, love, and a sense of awe at his strength. The initial days were filled with tests and procedures to understand his unique anatomy and plan the best course of action. Quincy’s first day included managing high lactate levels and preparing for a PICC procedure to ensure he received the necessary medications.

Each day brought new challenges and triumphs. From navigating bottle feeding difficulties due to his cardiac and intestinal issues to undergoing intricate procedures, Quincy’s journey had been marked by courage and resilience. The support from the NICU team at Oregon Health and Science University was instrumental in managing his complex needs.

Embracing Hope Amidst Uncertainty

From the outset, we knew Quincy faced significant challenges with his heart. Diagnosed with Hypoplastic Left Heart Syndrome (HLHS), single ventricle, and pulmonary atresia, we prepared ourselves for a complex journey. However, after his birth, additional conditions emerged: MAPCAs, severe tricuspid valve regurgitation, and an overarching genetic component of heterotaxy. These complexities made his path forward uncertain and required careful reassessment by our dedicated medical team.

Initially, there was a surgical plan designed to address Quincy's conditions through his early years. Most children with HLHS undergo a three-stage surgical process, culminating in the bi-directional Glenn procedure. For Quincy, this plan included an additional specialized procedure for his MAPCAs called unifocalization, best performed by experts at Stanford. However, Quincy's severely leaky tricuspid valve added a layer of complexity, making surgical intervention even more challenging.

Given the multiple cardiac anomalies, our medical team revised their plan. The focus shifted to supporting Quincy’s growth and feeding, putting surgical interventions on hold. This decision was reviewed and confirmed by the top three medical institutes in the country, aligning with our team's findings and reinforcing the best course of action. The goal was to reassess his condition at 3-4 months of age, using a catheter procedure to measure cardiac functions. This critical assessment would determine if Quincy was a candidate for the necessary surgeries to correct his heart.

During this waiting period, Quincy remained in the hospital, surrounded by love and care. The possibility of a heart transplant was explored, but the heterotaxy component ruled this out, as his altered cardiac and vascular anatomy would not accommodate a normal heart.

We continue to hope and pray for a miracle, cherishing every moment with Quincy and showering him with all the love we could give. The path ahead was be uncertain, but our commitment to Quincy’s well-being and our faith in his strength remained.

Cherishing every precious moment

After 7 long weeks at the hospital, so many meetings, discussions, and tough conversations with the doctors, our family, and ourselves; Knowing the future is uncertain, we wanted to create as many happy memories as possible and make Quincy feel loved and comfortable at home. We made the incredibly difficult decision with the team to transition home, where Quincy can be surrounded by family and our dogs, on hospice care.

We were profoundly grateful to the entire team at OHSU for their relentless efforts. Despite Quincy’s progress, his heart failure was worsening. The medical team had taken every steps to support his recovery. Top institutions, including Stanford and Boston Children’s, had reviewed Quincy’s case. Unfortunately, they were not able to offer surgical interventions at all.

Quincy was discharged in the final week of September. We spent 6 weeks at home as a family, loving each other, making memories, having dance parties, going on walks with the dogs, meeting new people and friends, taking trips, just living as much life as we possibly could with all the time that we had.

We never anticipated how swiftly time would pass, and now we'd give anything to return for just one more minute.

Quincy, Our Forever Love

Quincy Kai, our precious son, passed away peacefully on November 7th, held in our loving arms. His three months with us were filled with immense joy and unforgettable moments. Quincy taught us the true meaning of strength and bravery, leaving an indelible mark on our hearts.

Though our time with him was brief, it was the most extraordinary experience of our lives. Quincy knew he was deeply loved, and his memory will live on in our hearts forever. We are eternally grateful for the love and support from our family and friends during this journey.

Quincy, you are forever with us. Mommy and Daddy will love you always. Thank you for being our brave warrior.