For much of his life, DJ didn’t have the luxury of being outside to watch the vehicle traffic. Instead, he had to wave at the cars and buses from the inside of a hospital window while he awaited a much-needed heart transplant. But since he received the gift of a new heart on June 19, 2024, he has been able to live just like any other 2-year-old.
DJ’s mom, Sarah Hahn, first learned there was something wrong with him at her 20-week ultrasound. Then, at 6 months’ gestation, he was diagnosed with complete heart block. “It was terrifying,” she said. “I had to go in for monitoring two or three times a week and have ultrasounds, stress tests and echocardiograms.”
When he was born at American Family Children’s Hospital in Madison, Wisconsin, DJ spent a short amount of time in the neonatal intensive care unit and then went home. Sarah remembers checking his heartbeat in the morning and at night—usually it was around 40-50 beats per minute. Slower than usual for a baby; however, he grew like a regular child—meeting his milestones and laughing a lot.
At 8 months, DJ received a pacemaker for his heart. Hahn and her fiancé, Denzel Barnes, thought that would be the solution to his problems. But in November 2023, when he was 15 months old, DJ was admitted to the hospital because he had been vomiting and “just wasn’t himself.” They learned he was in heart failure—and while they didn’t know it at the time, he would remain in the hospital for the next eight months.
“I was shocked,” Sarah said. “I didn’t necessarily know what to expect from getting that diagnosis.”
After a cardiac catheterization, doctors at American Family Children’s determined that DJ’s heart failure caused his lung artery pressures to be too high for heart transplant. His doctors started him on medications and scheduled him for ventricular assist device (VAD) surgery. A VAD is a pump that helps the heart pump blood. It managed his heart failure and helped his lungs recover.
But, just before that surgery, DJ became ill with three separate but simultaneous viral, bacterial and fungal infections. The team needed to buy him time to clear the infections– especially the fungal infection– before putting in the heart pump. The only way to get DJ more time was with extracorporeal membrane oxygenation (ECMO), a miniature version of the heart lung machine.
“We thought ECMO was the most terrifying thing,” said Sarah. “But it allowed him to survive.”
By Dec. 19 the infections were treated well enough to move forward with the VAD surgery. About a month after that surgery, he had recovered enough to be listed for a heart transplant.
The whole time, DJ was in American Family Children’s Hospital. His care team became family to DJ and his family and incredible bonds were formed. The team worked to normalize DJ’s life in the hospital, brightening his days with fun decorations and helping him experience the things that he would have done at home, like passing out candy for holidays. “The care was phenomenal,” said Sarah. “I could not have asked to be in a better place. I felt that they really cared about my son. They cared about my whole family.”
When Sarah received the call that a donor heart had been located for DJ, she was ecstatic. It turned out to be exactly what he needed. “Once he woke up, he was ready to go again,” she said. “He looked like the DJ that I knew.”
Since the transplant, DJ has suffered no complications, and he’s enjoying just being a 2-year-old boy. “If you saw him going on a walk with us, you would have no idea what he’s gone through,” Sarah said. “He’s the happiest boy. He just wants to make people smile and laugh.”