Fifteen-year-old Anthony Stokes got a new heart.
Now comes the hard part – keeping the heart.
Anthony, a Lithonia 10th-grader, catapulted into the national spotlight last week when word got out that Children’s Healthcare of Atlanta at Egleston had declined to place him on a donor list for a transplant because he had a “history of noncompliance.”
People who receive transplants must adhere to strict medication regimens to keep their bodies from rejecting the organs. A person can be disqualified from receiving a transplant if hospital officials think the patient won’t stick to that regimen, have no support system or an inability to pay for expensive anti-rejection medicines.
Anthony suffers from dilated cardiomyopathy, in which the heart’s main pumping chamber, the left ventricle, fails to pump enough blood. The condition is generally treated with medications or devices such as pacemakers before a transplant is considered. At the time Anthony was diagnosed, doctors said he would die within six to nine months without a transplant, said the teenager’s mother, Melencia Hamilton.
Mark Bell, a spokesman for the family, said Anthony was resting under heavy sedation Wednesday after his five-hour operation on Tuesday.
“The first thing [Anthony’s mother] did was thank the organ donor,” Bell said. “We don’t know who the donor was, but we are very grateful.”
The family, as well as critics and representatives from several civil rights organizations, publicly charged the hospital with rejecting Anthony because of his age, race and a history that includes at least one brush with the law. Anthony wears a court-ordered monitoring device, which is mother said is for fighting in school.
The hospital officially changed course and agreed to put him on the list on Aug. 13, just seven days before he got his new heart.
“It’s not unusually fast,” said Lance K. Stell, the director of the medical humanities program at Davidson College. “Depending on blood type, a kid that’s listed [urgent] will be transplanted quickly.”
Officials at Children’s Healthcare would not comment on the case. Dr. Jeff Dreyer, medical director of the heart transplant program Texas Children’s Hospital in Houston, said, while not speaking specifically about Anthony, that based on statistics, a typical teen would have a “50-50 chance of retaining that organ and having it working for him for 12-14 years post-transplant.”
Dreyer said based on his previous experiences, the speed of Anthony’s transplant “is not common, but it can happen.”
He shot down speculation that media pressure forced Children’s Heathcare to bump Anthony to the top of the list.
“The physicians don’t control the supply side. So you simply don’t know when a heart may become available,” Dreyer said. “It is not as if they can jump him ahead of others based on media pressure. It was just serendipity that an offer became available.”
According to United Network for Organ Sharing, once a patient is placed on the transplant list, the median wait time is 50 days, if the patient’s condition is considered urgent. Anthony’s family had initially been told by hospital officials that it could take about three months to find a suitable heart.
Citing standard confidentiality rules, the hospital never fully explained why Anthony was rejected or eventually placed on the list.
Once a patient is accepted and listed on the transplant list, all of the patient’s data is plugged into a national network that looks for a donor who is a good match. Among the factors are blood type, body size, age, location and urgency.
Bell said Anthony was notified at noon Tuesday that a heart was available. He was in surgery at 6:15 p.m. for an operation that lasted until 11:30 p.m. Bell said the family was stunned by how quickly the transplant happened.
“On Monday, he had an operation where they attached a pump to his heart,” Bell said. “So they didn’t know a heart was coming in that fast.”
About 10 years ago, Tammy Madden’s family found itself in a similar situation, when her then 14-month-old daughter, Megan, was diagnosed with dilated cardiomyopathy. Megan is now 11 and, although she uses a walker because of a stroke, leads an otherwise normal pre-teen life — filled with gadgets, gossip, sports and horseback rides.
“Compliance is at he top of the list,” warned Tammy Madden. “This is a precious gift that you have been given and you need to guard it with your life.”
Megan left Children’s Healthcare with 21 prescriptions. Now she is down to four medications and twice-a-year hospital visits for check-ups.
“Megan has never gone one day without her medication,” Madden said. “My biggest advice to [Melencia Hamilton] is the compliance. To make sure that child gets that medication, even if she has to stand over him and watch him take it. And always remember that the first year out of the transplant is the hardest, so don’t give up.”