Two-year-old Adalynn Grace Rogers was born with a congenital heart defect known as Hypoplastic Left Heart Syndrome or HLHS. She died in the presence of her family waiting for a heart donor. Her tragic final moments were captured on camera as part of photographer Suha Dabit’s project, “World of Broken Hearts.”
The parents of Adalynn Grace, Justin and Kristi, agreed to make the photos public to raise awareness for children with congenital heart defects. According to the Children’s Heart Foundation, 1 in 100 babies in the United States is born with a congenital heart defect, and approximately 25% of them require surgery to survive.
Adalynn’s mother posted to her Facebook page: “’I don’t think I can even put into words how that felt, or how numb, broken and empty I feel now. It all still feels like a horrible nightmare I won’t ever wake up from.” She continued, “I miss her. I miss her voice and her ability to make me smile every time I looked at her.”
Kristi stated in an interview with TODAY that she and her husband were not planning on sharing the photos of their dying two-year-old, but that they believed the images could make a positive difference. “After I saw them I thought it could help more people than I could ever have imagined,” she said.
Kristi was made aware of Adalynn’s condition when she was 32 weeks pregnant. Hypoplastic Left Heart Syndrome results in only one of the baby’s heart chambers being developed enough to pump blood through the body. Adalynn Grace had her first heart surgery two days after she was born, and her second five months later.
Photographer Suha Dabit was enlisted at the suggestion of a social worker. Regarding the photos of the two-year-old’s final moments, she told TODAY in an email: “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.”
The Rogers family set up a fundraising page in Adalynn’s name for other children with congenital heart defects. The page was publicized with the hashtag #addystrong. It has raised more than $10,000 to help fund research for CHD’s. Kristi wrote on her Facebook page “I want to thank everyone for the support and love we’ve received during this time.”
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