During the final few hours of her life on January 26, 2-year-old Adalynn Grace Rogers had her parents and three siblings by her hospital bedside, taking in every second they could with her. In the midst of that anguish, the grieving parents wanted to document their final moments together to shine a light on their daughter’s story and bring awareness to the heart defect that claimed their daughter’s life.
“It’s another look at her life and what she went through,” Adalynn’s father, Justin Rogers, 28, of Arlington, Kentucky, tells PEOPLE. “They were our final moments with her.”
Adalynn was born on January 11, 2016 with hypoplastic left heart syndrome, a birth defect that affects normal blood flow through the heart. At just 2 days old, she had heart surgery, and two months later, she was finally able to go home.
“She had to be fed through a feeding tube, but besides that, she did everything like a normal baby would,” says her mother, Kristi Rogers, 28. “We didn’t know what was going to happen.”
But on November 8, 2017, Adalynn went into heart failure, and they were told she needed a heart transplant. One month later, a mechanical pump was implanted inside her tiny chest to assist her heart.
The family anxiously awaited a transplant, which was Adalynn’s only chance at surviving. “It was scary because we didn’t know when or if it would come,” says Kristi.
Their hope for Adalynn’s future was shattered on January 23, when she went for a CT scan because of internal bleeding. Adalynn was on a breathing tube and after the scan, she vomited and doctors believe she aspirated into her lungs. She was left without oxygen for 15 to 25 minutes, which resulted in severe brain damage.
When doctors told the family that she was no longer eligible for a transplant, they knew there was nothing more they could do for her.
“We were lost,” says Justin. “We literally just found out there is nothing else that they could possibly do to save her. All the hope that we had built up was gone.”
He adds: “It was just a question of how much time we had left with her before we had to tun off the machine.”
It was during this time that a social worker contacted photographer, Suha Dabit, about taking pictures of the family together at the hospital.
Dabit, who also runs an organization called World of Broken Hearts, raises awareness of congenital heart defects, and also has a daughter who received a heart transplant.
The Rogers agreed and Dabit arrived at the hospital at 9 a.m. on January 26 to document their tearful goodbyes. Just hours later, at 11:58 a.m., Adalynn died.
“It was heartbreaking,” says Justin. “Seeing our children have to say bye to their sister — nobody is ever prepared for that.”
“We told her how sorry we were that all of this happened,” he adds. “There was not a whole lot to say except for that we’d take her place if we could.”
For Dabit, she had to hold back tears as she documented their final moments together. “I knew how important this moment was,” says Dabit. “It was very, very emotional.”
Looking back, Kristi and Justin want to focus on how “happy” their baby girl was when she was alive, and do whatever they can to bring awareness to her condition.
“There was never a bad moment with her,” says Justin. “She was literally always smiling and bringing joy to everybody around her.”
The Rogers hope that by showing the world a small glimpse of what their daughter went through, it will help shed a light on her condition and encourage organ donation. Through a Facebook page they created, they want to raise awareness about Adalynn’s heart defect, which affects around one in 100 newborns.
“We didn’t know how common this condition is,” says Justin, “and how little people know about it.”