This 9-year-old's constant companion is an AED

Wherever 9-year-old Adeline Evelyn Dinin goes, her AED is probably by her side.

School. Dance class. Girl Scout meetings. Playdates. The automated external defibrillator, a tool that can help restart a heart that's stopped, could save Adeline's life.

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 someone 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.

Meanwhile, because the syndrome is genetic, doctors also took a closer look at the family history.

They learned Aaron's grandfather died young after a heart attack. He'd also had car accidents during which he likely passed out, then regained consciousness. This also made Aaron and Alessandra think more seriously about fainting episodes Aaron had over the years. After his most recent, three years before, his doctor didn't think it warranted further study. Now, Adeline's diagnosis changed things.

While she was in surgery, Aaron got an electrocardiogram to analyze his heart rate. An electrophysiologist told Aaron that he, too, appeared to have long QT. Genetic testing confirmed Aaron and his father carried the genes.

"Aaron had this condition all along, and he hadn't been treated," Alessandra said. "Adeline was essentially her dad's guardian angel."

Aaron and Adeline started medicine to keep their blood pressure in normal range and prevent irregular heartbeats. At home, Alessandra worried loud noises like the blender or doorbell would startle Adeline and Aaron, sparking a cardiac arrest. Gradually, the feeling subsided after regular doctor checkups showed dad and daughter were doing well.

Aaron kept up with his regular workouts and felt fine. When Adeline was 3, he decided to get an implantable cardioverter defibrillator as extra reassurance. The battery-powered device monitors his heart rhythm and can correct a potentially fatal abnormal rhythm by delivering a shock.

Today, the Dinins don't worry about the noisy blender, doorbell or their dog barking. Amusement park rides designed to startle, however, are strictly off-limits. But there are other rides. "We're not stopping life," Alessandra said.

Aaron and Adeline's devices and medicines make her feel confident and comfortable. 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."

Adeline and Aaron will need new devices when it's time for new batteries. Adeline will likely have her device updated after she turns 10. Doctors will continue to closely monitor her, especially through puberty, when hormones could impact her condition. Every day, the Dinins are grateful for Adeline's team.

"If she hadn't been diagnosed right away, we could have found her one day in her crib not breathing," Alessandra said. "We were so fortunate she got diagnosed on day one of her life so we have the infrastructure in place to keep her safe."

Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.