Three open heart surgeries and no cure. That was the uncertain future surrounding our son Theo’s life expectancy.
In March 2020, the Fetal Heart Center at Children’s Health Dallas determined Theo had Tricuspid Atresia and Hypoplastic Right Heart Syndrome, meaning he would be born with only half a heart.
My wife Brooke and I were devastated.
Theo was born in July and spent his first five months in and out of the hospital, enduring numerous surgeries and complications. Due to COVID restrictions and his complex condition, we were unable to be with Theo as a couple, and we couldn’t hold our son for weeks on end. We felt helpless and traumatized. Our only means of providing him with companionship and support was sitting beside his hospital bed.
When we finally brought Theo home, the challenges shifted. We had to navigate countless doctor’s appointments, medications, therapies, and traumatic scenes. At a time we normally would have shared the joy of a new child and welcomed the help of family and friends, we lived in isolation to avoid potential risks to Theo’s health. Our older son missed out on preschool. We had to forgo gatherings and travel we had previously enjoyed. Brooke had to resign from her job to care for Theo, putting the weight of providing solely on my shoulders.
Despite every difficulty, Theo’s resilience has been remarkable. He’ll require another open-heart surgery in the coming year, but as he approaches his third birthday, he is thriving.
His CHD remains a lifelong condition with a lot of uncertainty, but our family has learned to appreciate the present and find strength we didn’t know we had.
I never expected to become a heart dad, and now recognize the lack of support for fathers in similar situations. If you’re a heart dad, I know you’re probably struggling too. I encourage you to get the help you need and, together, we can break the stigma surrounding heart dads’ mental health struggles.
As a board member for Conquering CHD-Texas, I initiated “heart dad hangouts” to provide support and camaraderie to other fathers in the Dallas-Fort Worth area. These gatherings allow heart dads to bond and have fun together without any pressure to discuss their children’s journeys unless they want to.
My message to other heart dads: remember this is a marathon, not a sprint. There will be highs and lows along the way, and it’s essential to celebrate even the smallest victories. While you wrestle with the uncertainty of the future, you can learn to accept that not everything can be controlled. It really is true that we need to take life one day at a time and cherish each moment.
Heart dad, you are not alone in your struggle.