While waiting for a heart that would never come, Adalynn Rogers passed away on January 29. The 2-year-old from Kentucky suffered a devastating brain injury during her grueling wait for a life-saving heart, and the intimate photos from her final moments with her family are bringing the Internet to tears. As her parents Kristi and Justin take comfort in the fact that their baby girl is no longer in pain, they hope that their heartbreak will help save another family from enduring this agony.
Two-year-old Adalynn was born with a congenital heart defect (CHD) and spent her short life waiting for a heart transplant.
As Adalynn waited for the heart that would never come, her own heart began to fail, so doctors implanted a right ventricular assist device (RVAD) in December. This is a mechanical pump that's placed inside a person's chest to help a weakened heart pump blood.
Although the surgery saved her life for the time being, it also came with complications.
Adalynn was admitted to Monroe Carell Jr. Children's Hospital at Vanderbilt in November, where the toddler later aspirated and was left without oxygen for 15–25 minutes.
She was left with severe brain damage, and her parents are sharing these final moments of her life to help raise awareness.
After further testing, doctors determined that Adalynn's brain damage was so severe that she was no longer eligible for the heart transplant.
Adalynn was surrounded by her three siblings and her parents as she passed away.
Doctors put her on ECMO, a machine that drains blood to add oxygen while removing carbon dioxide and then returning it to the body in order to bypass the heart and lungs. This allowed her family to say their heartbreaking goodbyes to Adalynn.
More from CafeMom: This Mom's Photo of Her Girl & Dad Dying Together Is Beyond Gut-Wrenching
Photographer Suha Dabit is the parent of a heart transplant recipient and volunteered to capture these moments.
While Adalynn was still on the ECMO machine, Dabit gave her family a priceless gift: She captured their final moments together. "Although I knew it would be extremely hard to take these images, I knew that these will be their last memories of her captured," Dabit tells CafeMom. "I know they will hate and love looking at these images forever."
Dabit is the founder of World of Broken Hearts, an organization that raises awareness for congenital heart defects and organ donation.
"I could tell you about the approximately 40,000 babies that are born every year with a congenital heart defect. That is roughly 1 in 100 newborns, every year," she wrote on Facebook. "I could tell you about the half a heart that Adalynn was born with or the many more different congenital heart defects that affect so many children across the globe."
Her heartbreaking photos speak louder than Dabit ever could.
"I could tell you that Adalynn is one of the 20 people that die every day waiting for a transplant," she wrote. "Or, I could tell you about my perspective of what it was like being in that room to document their last moments together as a family of six."
"There aren't any words to describe the pain and love I witnessed."
"CHD claims so many lives, too many lives," she wrote. "It changes you in every aspect of your life, and to the very core of our heart and soul. It is hard, difficult and unfair."
"It tears families apart and forces siblings to grow up way too fast."
Dabit's own daughter shares a very similar story to Adalynn's, but fortunately hers had a very different outcome. "[She] received her heart after six months of waiting," Dabit tells CafeMom. "We have a happier ending and were able to bring our sweet girl home again. That was five years ago in February."
After everything she's personally gone through, Dabit is proud to offer free photography to CHD families to capture their strong little warriors fighting the biggest battle of their lives. "I have been in their shoes," she says. "This could have very easily been us. I felt Kristi's unconditional love for Addy and the excruciating pain. It was hard, I could barely hold it together. I left with a piece of my heart missing. I wish no family would ever have to go through this, but it happens, every day."
More from CafeMom: Mom's Heartbreaking First-Day-of-School Photo Shines a Light on Childhood Cancer
These were Adalynn's final moments, after a left ventricular assist device was removed.
Shortly after these photos were taken, Dabit left the room so that doctors could privately remove her from ECMO and allow her to pass on surrounded only by close family members.
Now, her parents are sharing their pain for an important reason.
Dabit tells CafeMom that she offers to keep all images private that she takes for families in the hospital. But Adalynn's parents didn't take her up on it. "I am thankful that Kristi and Justin allowed me to share such intimate moments of their family with the world, to spread [some] much-needed CHD and organ donation awareness," she says. "This is CHD. The pictures are as raw and real as it comes. We need a cure. We need research funding."
"This. This is the reality for many CHD families every day."
