The phone rings. I hear the shaky voice of a mother on the other end, her words filled with raw fear and heartbreak. She’s just received the kind of news no parent should ever have to hear. The lump in my throat grows as I listen to her, because I know that voice all too well. It’s a voice of pain and devastation, a voice I’ve heard more times than I wish. Each time, it strikes me the same way—tears filling my eyes, the heaviness settling in my chest.
I walked into Tyler’s room at Vanderbilt Children’s Hospital, where the silence was interrupted only by the sound of beeping machines, each one marking the delicate existence of the tiny lives within the rooms surrounding us. Amanda, Tyler’s mom, was sitting in a chair, holding her two-week-old son with an overwhelming sense of love. His dad and grandmother sat nearby, their faces etched with worry, their hearts heavy with the weight of what they knew was ahead. Tyler’s big brother Cody was nearby, full of life, playing with his dinosaurs, unaware of the gravity in the room.
Before I enter a room like this, I always pause. There’s no magic in the words I can offer—nothing to fix the unfixable. I just hope my presence brings a little bit of comfort. I begin capturing what I can: the small, perfect fingers, tiny toes, and the love that fills every corner of the room. I watch Amanda kiss Tyler’s head, hold his hands with such tenderness, and whisper to him how perfect he is. Her voice trembles as she says, “He never had an outfit on. I just want to put an outfit on him.” Through tears, she finally dresses him and, with a smile between sobs, tells him how handsome he looks.
As a heart mom myself, I felt her pain in a way few can understand. There’s a bond between us that no one wishes for, but when you’re in it, it’s undeniable. We share tears, we hold each other up, and even when words fail, a single hug says everything: “I know. I’m sorry. I am so sorry.”
Several days later, Amanda and her family had to make the unimaginable decision. The machines that kept Tyler alive were turned off, and they said their goodbyes to their sweet boy. It was a moment that no parent should ever have to endure, but it was one that Amanda and her family faced with unimaginable strength.
The photos I took that day may seem like simple images, but my hope is that they serve as a powerful reminder of the reality of congenital heart defects (CHD). These photos are more than memories; they’re a call for greater understanding, greater compassion, and, most importantly, greater action. They show the truth of what so many families face behind closed doors, hoping that their stories will inspire change.
My name is Suha Dabit, and I’m a heart mom, photographer, and lifelong advocate for CHD and organ donation awareness. Since 2015, I’ve been working to raise awareness about these devastating conditions, and in 2018, I had the honor of joining the board of The Brett Boyer Foundation. The foundation’s mission to help fund groundbreaking research has been a journey I’m deeply passionate about. In recent years, I’ve taken on the role of Director of Awareness and Visibility, focusing on storytelling and using my photography to shine a light on CHD in powerful ways.
Throughout my journey, I’ve had the privilege of being alongside families during their most vulnerable moments. I’ve been in hospital rooms with parents who are holding their children, knowing that time is limited. I’ve witnessed firsthand how important it is to raise awareness, because with awareness comes support—and with support, we can drive the research funding we so desperately need.
Amanda, Nick, and Cody—thank you for allowing me into such a sacred and painful part of your lives. Thank you for letting me share Tyler with the world, for showing us his spirit, his beauty, and his fight. I’m so sorry that there weren’t more options for him, but please know this—we are not giving up. We are fighting, with every tear and every heartbeat, for a future where stories like Tyler’s have a different ending. A future where no parent has to say goodbye so soon.
CHD has taken too many, but through the work of families like Amanda’s, the efforts of organizations like The Brett Boyer Foundation, and the dedication of every person fighting for awareness and funding, we are one step closer to changing the story. We will continue to share these stories, because every story, like Tyler’s, is worth telling. And together, we will fight for the future.
