Fifteen-year-old Anthony Stokes’ heart is failing. But even though it may only last a few more months, doctors are refusing to even put him on a transplant list. The reason, they say: They don’t think he’ll follow through with the medical regimen needed to keep him alive after a heart transplant.
The teen showed up at Children’s Healthcare of Atlanta four weeks ago, complaining of shortness of breath and chest pains. It didn’t take long for doctors at the pediatric hospital to diagnose an enlarged heart – and to tell him that there would be no help for it.
In a segment that aired on TODAY Tuesday, Anthony’s mother, Melencia Hamilton, told NBC that the hospital refused to even put her son’s name on the transplant list. A letter from Anthony’s doctors says, “Anthony is not a transplant candidate due to having a history of noncompliance.”
What doctors are saying is that they don’t think Anthony will be willing or able to follow through with aftercare. They’re concerned, for example, that he won’t take prescribed medications or that he’ll miss follow-up appointments.
"What places you on the lower part of the transplant list is evidence that you haven't followed through with taking your medications in the past," said Dr. Nieca Goldberg, a cardiologist at NYU Langone Medical Center in New York City, in an interview with Matt Lauer that followed the prerecorded segment on TODAY. "Research has shown that if you fail to take your heart failure medications before the transplant, you’re unlikely to take them after."
But Hamilton says doctors have no evidence to suggest that, since Anthony has no history of illness. She believes that the hospital is punishing her son for run-ins with the law. When he was admitted to the hospital, he was wearing an ankle monitor because he’d been placed under house arrest for a recent fight.
"He’s a young boy,” Hamilton said. “He's going to make mistakes, but I still think he deserves a second chance."
The hospital told NBC it couldn’t discuss the case because of patient privacy laws, but it did release a statement.
"The well-being of our patients is always our first priority,” hospital representative Patty Gregory said in the statement. “We are continuing to work with this family and looking at all options regarding this patient's health care. We follow very specific criteria in determining eligibility for a transplant of any kind."
Hamilton fears that without a new heart, her son could be receiving the most severe punishment for his behavior.
“I just pray,” she said. “I pray constantly.”
"I think there has to be better communication between the medical personnel and the family," Goldberg told Lauer during her TODAY interview. "Certainly they can always go for a second opinion at another hospital." She also suggested that Hamilton "could appeal the decision to the ethics committee of the hospital."
Bioethicist Art Caplan says that while compliance needs to be a factor in deciding who gets a transplant, “teenagers are almost noncompliant by definition.”
Caplan, who is director of the division of medical ethics at Langone Medical Center, said that before turning Anthony down for a transplant, Children’s Healthcare should try putting him and his family through an intensive program explaining the consequences of ignoring doctors’ instructions and skipping medications.
“Even if it means the loss of some organs that could have saved other lives, isn’t gambling on kids justified by giving them a shot at life?” he said.