She’s on a mission to raise awareness about QT syndrome
She carries it out of an abundance of caution because of a heart condition she was born with that could cause her heart to malfunction at any moment.
Adeline’s parents, Alessandra and Aaron, discovered the problem on Adeline’s first day of life.
She needed surgery on her seventh. Ever since, Adeline has lived a mostly ordinary life, with some exceptions — such as having an AED as a constant companion.
Because of Adeline’s initials (chosen before they knew of her heart problem), the Dinins call the device “AED’s AED.” When coordinating kid pickups, the couple often quip to each other: “Do you have the AEDs?”
Adeline’s initials are also why she’s branded herself on social media as @AED__Girl. The Dinins created her Instagram account as a way to share content created by the hospital in Durham, North Carolina, that treated Adeline as a baby.
The nonprofit Children’s Miracle Network Hospitals named Adeline a National Champion, one of several ambassadors for pediatric health care, in 2024.
Adeline enjoys creating content for her more than 4,000 followers. In one video post, she dances to a Yeah Yeah Yeahs song near an AED with the caption, “Wait, do you know where an AED is?”
“I love making the dance videos,” Adeline said.
In another, she takes followers through the steps of a pediatric electrophysiology appointment. For New Year’s, Adeline told her followers: “Looking for a great New Year’s resolution you can actually keep? You should learn CPR and how to use an AED!”
“It’s to increase awareness about long QT syndrome, to get people thinking about AEDs and notice them, and to encourage people to get CPR trained,” Alessandra said. “We’ve been contacted by people from all over the world and we try to help as best as we can.”
Adeline doesn’t know whether her social media posts have directly led to any lives being saved. But she does know that the discovery of her heart condition made a difference in someo ne else’s life — her dad’s.
It all goes back to the day Adeline was born. That night, her temperature dropped and nurses took her to the nursery to warm her up. A nurse gave her formula, and Adeline coughed and choked. After clearing the formula, she listened to Adeline’s chest with a stethoscope to make sure she was OK. Adeline’s heartbeat didn’t sound right.
Medical staff hooked her up to a heart monitor. Adeline’s heart beat too fast, too slow, then too fast again. She was rushed to a larger Durham hospital where she was given medicine to stabilize her heart.
Doctors suspected she had long QT syndrome. It’s a problem that happens when the heart’s electrical system takes longer than normal to recharge between each heartbeat, which can lead to life-threatening arrhythmias (irregular heartbeats) and sudden cardiac death.
Tests showed that Adeline had type 2 long QT, which is caused by a deficiency of potassium ion activity in the heart. Sudden, startling noises like alarm clocks or car horns can trigger arrhythmias for people with type 2 long QT.
This led to the operation on her seventh day; she received a pacemaker to keep her heart rate steady.
Still, at times, it’s a challenge to navigate Adeline’s new activities.
“It’s a balancing act,” Alessandra said. “If Adeline goes somewhere like a new camp, we want them to take her condition seriously, but we also want her to be able to participate and to have the same experience as everyone else.”
