Grieving parents share 2-year-old's final moments to encourage organ donors

Two-year-old Adalynn Grace died from a heart condition in January, but her parents are hoping their grief can help others.
by Ethan Sacks / / Source: TODAY

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Kristi and Justin Rogers decided to go public with their most personal and private moment of anguish — all for a greater cause.

The Arlington, Kentucky, couple is sharing the heartbreaking photographs of the exact moment their 2-year-old daughter, Adalynn Grace, died from complications of a congenital heart defect on Jan. 26. But they are doing so with the conviction that by sharing their loss, they can spread the word about their daughter's condition and the importance of organ donation.

heart health month, organ donation
Kristi and Justin Rogers say their final goodbyes to their 2-year-old daughter Adalynn, who died from complications of her congenital heart condition on Jan. 26. Suha Dabit/World of broken hearts

Then maybe another family out there could be spared from the pain they are experiencing, the couple told TODAY.

"When we asked for the photographs to be taken, it wasn't with the thought of sharing them, it was for us to remember our daughter's last moments," Kristi Rogers, 27, said. "But after I saw them I thought it could help more people than I could ever have imagined. Let her share her story."

heart health, organ donation
The Rogers family is hoping these photos will spread the word about their daughter's illness and about the need for organ donation.Suha Dabit/World of broken hearts

Rogers learned about her daughter's heart condition when she was 32 weeks pregnant: Only one chamber of the baby's heart developed enough to pump blood. Adalynn was a fighter from the beginning: Two days after she was born on Jan. 11, 2016, she had her first heart surgery. A second surgery followed five months later and the tenacious tot adjusted to living with a feeding tube and intense examinations every four to six months.

"She got her meds and her food through her tummy, other than that she was a normal kid," her mom said. "We made it as normal as possible."

Suha Dabit, heart health month
Kristi Rogers's anguish was captured at the family's request by photographer Suha Dabit.Suha Dabit/World of Broken Hearts

But in November, Adalynn's condition took a turn for the worse as she went into heart failure. Doctors warned the family that their daughter needed a heart transplant to survive. Unfortunately, they ran out of time to find a suitable donor: Adalynn suffered severe brain damage from a lack of oxygen on Jan. 23.

Once they made the decision to take their child off life support three days later, photographer Suha Dabit was enlisted at the suggestion of a social worker. The goal was to document their final moments, as Kristi, Justin and the couple's three sons — Camden, 7, Greyson, 5, and Kolton, born this year on his sister's second birthday — said their goodbyes.

Brothers Camden, 7, Greyson, 5, and Kolton, one month, mourn the loss of their sister.
Brothers Camden, 7, Greyson, 5, and Kolton, one month, mourn the loss of their sister.Suha Dabit/World of broken hearts

"I witnessed the agony in a mother's eyes of not wanting to let go of her precious daughter, but loved her so very much she couldn't bear seeing her suffer any longer either," Dabit told TODAY by email.

"The photographer had the pictures to us before we turned Addie’s machine off," Rogers said. "Driving home from the hospital, I needed to update all the people who prayed for her and followed her story, and I couldn’t think of a better way than to share those pictures."

Then the family got the idea of sharing them wider. While Adalynn's organs were unsuitable for donation because of her condition, her parents hope the publicity from their case will inspire others.

"Really the message is to donate if you can, as hard as it is as when it's your child dying, and I know how hard that is," Rogers said. "If someone would have donated to Addie she would still be here."

But the photos, above all else, are a personal testament to a family's love for each other, and a reminder to Camden, Greyson, and Kolton as they get older of the bond they had with their late sister.

"It breaks my heart again every time I look at the pictures," their mother said.

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