An Atlanta teenager who was initially denied a spot on a heart-transplant waiting list because the hospital felt he was unlikely to follow doctors’ orders is now eligible for the new heart he needs — if one becomes available.
After doctors at Children’s Healthcare of Atlanta at Egelston examined Anthony Stokes in July, they told the 15-year-old and his family that he should go home and prepare to die.
“They told them they needed to go home and make preparations because he wouldn’t live past nine months,” said the Rev. Samuel Mosteller, Georgia state president of the Southern Christian Leadership Conference, who is speaking for the Stokes family.
But after news reports highlighted Stokes’ plight and the family fought for over a month to get their son on the transplant waiting list, the hospital has reversed course, the family told ABC News and local stations. The reason for the change wasn’t immediately clear; the hospital said in an e-mail response to a request for comment that it could not confirm Stokes’ status in order to protect his privacy. A family representative could not be reached Tuesday evening.
Until now, Stokes and his family had been trying to understand how a child who needs a new heart wasn’t being given the chance to get one by being put on the national heart-transplant list, which now numbers 3,534 patients. They speculated that doctors were arguing he wouldn’t follow instructions because of his grades, run-ins with law enforcement, and the fact that he was wearing a police ankle bracelet during a medical examination — something Mosteller said was because of a “youthful indiscretion that had nothing to do with jail.”
“We can’t determine what they mean,” Mosteller told TIME before the hospital reversed its decision. “They did not say. We only have what they wrote [in a letter].”
Transplant centers routinely consider more than just medical need in determining eligibility of transplant candidates. Organ transplants are invasive, complicated procedures that require extensive follow-up care to prevent infection and reduce the chances that patients will reject their donated organ. For heart-transplant recipients, that may require taking as many as 10 medications a day and visiting the hospital regularly for tests.
“If they are not able to take those medications and comply with medical care, then that is going to be problematic and potentially fatal,” said Dr. Duane Davis, director of transplant surgery at Duke University Medical Center. “And it’s certainly going to impact the longevity they will have.”
Generally, if patients are in desperate medical need, a transplant team, which includes the surgeons, doctors, a psychologist, social worker and other coordinators, will meet and evaluate a patient for transplant eligibility within 48 to 72 hours. The assessment includes discussions with the family to determine if the patient has the social and psychological support necessary to recover well from the surgery, and insurance or other financial ability to pay for the posttransplant medications, which include powerful drugs that suppress the immune system and are critical to the surgery’s success.
The social workers also determine how likely the patient is to comply with orders about postoperative care; frequent substance abuse can hamper this process, despite the patients’ best intentions. And it’s not just addiction to drugs like cocaine that doctors consider. Even smoking can significantly impair the success of heart and lung transplants.
But, Davis said of Duke’s procedures, “it’s rare for us to turn down patients [for transplant] up front. You’ve got to screw up repetitively for us to say no.”
Even so, Davis acknowledged, many patients who quit smoking or are able to give up their drug habit in order to receive a transplant sometimes do go back to their old ways after surgery when their health starts to improve. For people who remain addicted to illegal drugs, he said, “by and large the outcomes are just awful. The majority of those people won’t make it one year in that setting.”
That’s why transplant centers have strict criteria for assessing not just the patient’s medical need but other factors as well. In 1998, French surgeons performed the first hand transplant on Clint Hallam of New Zealand, who lost his hand in an accident while in prison. Hallam failed to take his antirejection drugs and follow up with his doctors, and after losing feeling in the limb, he asked surgeons to remove it in 2001.
It’s not clear how the transplant team at Children’s Healthcare evaluated Stokes’ case. Mosteller insists there was no basis for the doctors to determine Stokes would be noncompliant, and his mother told a local NBC affiliate he has no history of taking medication, so doctors had no way of assessing whether he would take the posttransplant drugs faithfully.
Hospital officials said in a statement that “there has been misinformation circulating” and that “patient care is always our top priority.”
As we stated previously, a heart transplant evaluation is an ongoing process based on the patient and his or her family’s ability to meet specific transplant criteria. While there has been misinformation circulating, Children’s cannot discuss the specifics of this case or any other case due to privacy rules. Our physician experts are continuing to work with this family to establish a care plan and determine the best next steps for the patient. At Children’s Healthcare of Atlanta, patient care is always our top priority.