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Meet Amari, Age 15
On the surface, Amari appears like any other teenager. He enjoys dancing, watching sports and chatting up girls. But the 15-year-old from Capitol Heights, Md. has defied medical odds.
Amari was born with a rare heart defect called Hypoplastic Left Heart Syndrome (HLHS). By the time Amari was four years old, he had three open-heart surgeries to reconstruct and connect the left and right sides of his heart. These surgeries allowed Amari to have a relatively normal childhood.
As he entered his teenage years, Amari’s heart increasingly had trouble keeping up with his body’s growth spurts and it began to weaken and fail. A heart transplant was Amari’s only option for survival. In March 2017, a donor heart became available.
The transplant surgery was performed by Sunjay Kaushal, PhD, MD, and his team. Dr. Kaushal, who specializes in pediatric cardiac surgery, is currently leading research on pediatric patients with HLHS so that one day in the future, children may not have Amari’s medical journey.
The transplant was a success. His care team of dozens included doctors, nurses, therapists, social workers, child life specialists, and housekeepers, just to name a few.
Now back at home with a brand-new heart, Amari is trying to lead a typical teenage life. But his heart transplant makes life anything but typical. Along with his mom and dad, Amari makes frequent follow-up visits to see his pediatric cardiologist Carissa Baker-Smith, MD.
Amari has regular heart biopsies, a surgical procedure where doctors take tissue samples of his heart and run tests to see how his body’s immune system is reacting to his new heart. He also takes 28 different medications each day.
It’s a big-league task for Amari, all at a time when most teens have many other things on their minds. But he is up for the challenge, and looks forward to growing up to becoming a chef.