For most people, the mourning process takes place in private. Overwhelming grief can cause anger, bargaining, denial, depression… all reactions that are completely natural, but experienced behind closed doors. And yet, one family from Kentucky, the Rogers, refused to contain themselves.
Instead, they had a photographer on hand to capture their final moments with their daughter as she passed away in a hospital. Then, they shared the images online in order to draw attention to their grief – and the fatal condition that caused it.
Before that day, parents Justin and Kristi Rogers happily presided over their family of five in Arlington, Kentucky. They had two sons, ages five and seven, and a two-year-old daughter, Adalynn. But Addy was different from her brothers, and doctors knew it from the moment she was born.
The family learned right away that Addy had Hypoplastic Left Heart Syndrome, or HLHS. Addy’s condition materialized as she grew in her mother’s womb: the left side of her heart failed to develop properly, which meant it couldn’t pump blood to the rest of her body.
Annually, about 960 babies born in the United States – that’s one in approximately 4,344 newborns – are diagnosed with HLHS. But doctors have plenty of treatment options for those found to be suffering from the congenital heart defect. These include medicines, nutritional changes, and even surgery.
And surgery was what Addy required. Just two days after she was born, treatment for her HLHS began with open heart surgery. Doctors connected the right half of her heart to the aorta so that the functional side of her organ could pump blood for her entire body.
Then, at five months old, Addy underwent a second open-heart procedure designed to reduce the amount of work required of her cardiovascular system. Afterward, her body could funnel oxygen-poor blood directly to the lungs, rather than requiring her heart to pump it there.
With those two procedures under her belt, Addy then spent almost a year and a half at home with her family, growing up alongside her brothers. Indeed, it wasn’t until the end of October of 2017 that things changed swiftly – for the worse.
That’s because, even though Addy had undergone two prior surgeries to improve her heart’s function, it wasn’t enough to keep it going indefinitely. “Her little half a heart is very tired,” her parents said. “It has done the job of a whole heart for 22 months but it’s not strong enough to keep her alive on its own.”
Doctors informed Justin and Kristi that their daughter would need a heart transplant in order to survive, news that was difficult for the couple to process. “To me, the hardest part was four weeks ago,” Justin told WKRN in January 2018. “[Addy] was playing like any other kid, and today she can barely lift her hand up to squeeze your thumb.”
At that point, the family was hopeful their daughter would receive the heart she needed – the typical wait time for a child in Addy’s position is somewhere between six to eight weeks. And as she waited, a machine doing the work of her heart for her, her parents decided to take her story to social media.
Justin and Kristi hoped that telling their daughter’s story would increase awareness for the importance of organ donation. They branded their updates with the hashtag #AddyStrong, through which they also received encouragement and positive thoughts from those who read Addy’s story.
Moreover, the Rogers family could hardly believe the response they got. “You get messages saying this little girl, you know, they weren’t very strong in their faith, and then they are reading all the stuff about [Addy] and all the stuff she’s been going through and then they are getting back right,” Kristi said. “I mean, my little girl did that. That’s a big deal.”
However, even with the world behind her, Addy’s health slipped into further decline. By January 17, 2018, she had already spent eight weeks on the transplant list. “Seeing her struggle so much was not in the plans while waiting for a heart,” Kristi wrote in a Facebook post. “Now I find myself trying to fight back the tears more and more each day.”
Tragically, on January 24, 2018, difficulty breathing left Addy’s brain and other organs without oxygen for more than 15 minutes. She began having two or three seizures a minute, which indicated that she’d suffered a brain injury. And, because of that, doctors determined that she was no longer a candidate for a transplant.
Two days later, on January 26, 2018, Kristi informed her social media followers of the unthinkable. “Tomorrow our family will have to say goodbye to the sweetest, bravest, strongest little girl I’ve ever known,” she wrote. “She’s fought so hard and been through more than anyone deserves. It’s not fair.”
But her family wouldn’t let Addy’s death be in vain. Instead, they hired photographer Suha Dabit to document their final goodbyes. Not only were Kristi and Justin present, but their two older sons and their infant son – born during Addy’s final weeks in the hospital – were there, too.
The heartwrenching snapshots were then shared on a Facebook page called World of Broken Hearts, which strives to raise awareness for congenital heart defects like Addy’s. Unsurprisingly, the post received thousands of reactions, comments and condolences.
And, ultimately, that is just what Addy’s family hoped the images would achieve. They wanted more people to know the frequency with which babies suffer from congenital heart defects, as well as the importance of organ donors.
Meanwhile, even with their daughter gone, the Rogers have continued their efforts by fundraising in Addy’s name. And the community has rallied around the young family, too: a GoFundMe site has already raised more than $30,000 to help them with medical bills.