It was at out 20 week ultrasound that we learned of Holden’s Congenital Heart Defect. We were naïve to parenthood and CHDs, but educated ourselves as much as we could to prepare for his arrival. Holden Joseph Flynn came out swinging on October 11, 2011, diagnosed with Unbalanced Complete Atrioventricular Canal, a complex single chamber congenital heart defect. Most people knew him as, “The Tin Man”, a nickname given to him to help better describe his defects to friends and family before he was born.
At only three months old, Holden underwent his first operation to repair his ailing heart.
Arnold Palmer Hospital and Strong Films filmed the ins and outs of that procedure, using the footage to create an award winning film. Holden would go on to require three more operations, before finally being listed for a transplant in October of 2013.
On January 5, 2014, while awaiting a new heart, he lost his battle with CHD.
At home Holden was strong, constantly finding ways to overcome his defect. He was a regular boy who loved fish, swings, and his dog Maggie. While hospitalized he passed his time with personalized wagon rides, often parading around the hospital several times per day. It was his safe zone, and a marker for all who knew his story.
Holden certainly isn’t the first child who has been through this. We’ve met so many families that come armed with similar stories of the amazing CHD battles they’ve watched their children fight through. Many end with victories, while others pass fighting an honorable battle until the end. There is one common theme though, a strong family, banding together to help their child in need.
Over the last two and half years we’ve been blessed to share Holden’s story as he carried on his day to day fight. In his passing we carry his fight in spirit through the foundation created in his name.
Read other features about Holden and his family:
Life After Losing My Son to Congenital Heart Disease – July 2017 – Featured on The Mighty
We are privileged to have Trey & Nicole share their story. Holden’s parents, Trey and Nicole are CHD advocates and we’re proud to have Trey as a CCHD Board Member. Together with their family and friends they created Yellow Brick Road: The Holden Flynn Foundation in July of 2014. The Foundation focuses on Congenital Heart Disease and deluxe hospital friends wagons.