Teen Dances for Joy After Receiving Heart Transplant
BALTIMORE – On the surface, Amari Hall appears like any other teenager. He enjoys dancing, watching sports and chatting up girls.
But the 15-year-old from Capitol Heights, Md. has lived an extraordinary life, defying medical odds.
Amari was born with a rare heart defect called Hypoplastic Left Heart Syndrome (HLHS). Only about 960 babies in the United States are born each year with HLHS. For unknown reasons, the heart's main pumping chamber, the left ventricle, does not develop completely prior to birth, which causes the right ventricle to have to take on the extra workload and pump harder. That stress can cause the right heart to fail and the baby to die. Treatment options are few, and only 50 to 60 percent of children with HLHS live to see their fifth birthday.
By the time Amari was four years old, he'd had three open-heart surgeries to reconstruct and connect the left and right sides of his heart. These surgeries allowed Amari to go on and 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. It began to weaken and fail. A heart transplant was Amari's only option for survival.
In December 2016, he became an inpatient at University of Maryland Children's Hospital in Baltimore, and was moved to the top of the waiting list to receive a heart transplant. Months went by; Amari and his family waited, and waited. Amari spent Christmas and his fifteenth birthday in the hospital. He missed his school friends and social life. Through it all, Amari maintained a positive spirit and never gave up hope.
Finally, in March 2017, a donor heart became available.
"Because of all the surgical interventions Amari has endured up to this point, his body's immune system has built up antibodies in the blood called immunoglobulins," says Sunjay Kaushal, PhD, MD, associate professor of surgery at the University of Maryland School of Medicine and director of pediatric and adult congenital surgery at University of Maryland Children’s Hospital. This means his immune system is essentially revved up and running on overdrive. "We had to carefully screen the potential donor heart. Luckily, we found a heart that met all the criteria."
The transplant surgery was performed by Dr. Kaushal 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 to go through what Amari has gone through.
The transplant was a success. In the video below, watch Amari dance from his hospital bed just days after his operation.
Amari recovered in the hospital for several more weeks. His care team of dozens included doctors, nurses, therapists, social workers, child life specialists, and housekeepers, just to name a few. Then, in May 2017, after five long months, Amari was released from University of Maryland Children's Hospital, and headed home.
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 team of cardiologists. He takes 28 different medications each day.
"It is critical that Amari comply and take his immunosuppression medications for the rest of his life," says Amari's transplant cardiologist Carissa Baker-Smith, MD, assistant professor of pediatrics at the University of Maryland School of Medicine and a pediatric cardiologist at the University of Maryland Children's Hospital. These drugs prevent the body's immune system from identifying the new organ as a foreign object and then from trying to destroy it. "Amari and his parents know that he has to take it every day at the right time without fail. A few days of forgetting could be life-threatening." From day one, Dr. Baker-Smith and her team have been managing all aspects of Amari's care before and after his transplant surgery.
He 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. If they discover the immune system has begun attacking the heart, then they must adjust his medication regimen.
It's a big-league task for Amari, all at a time when most teens have many other things on their minds. Teens and young adults are most at risk for heart transplant failure due to non-compliance with anti-rejection medications. But he is up for the challenge, and looks forward to celebrating many more birthdays.
Learn more about the Pediatric Heart Program of the University of Maryland Children's Hospital (UMCH) at the University of Maryland Medical Center.
For more details on the stem cell clinical trial, see identifier NCT02398604 on clinicaltrials.gov or on the University of Maryland Stem Cell Clinical Trial page. Or, call 410-328-3778 for more information.