Little A.J. fights on.
After being rushed to the hospital Sunday with an abdominal infection, the 2-year-old boy who desperately needs a kidney is in critical but stable condition.
But Emory is refusing to allow the boy's father to donate a kidney because of his criminal record.
The refusal has tied up A.J.’s chance for the life-improving surgery, even as it has raised a welter of ethical questions about a hospital’s power over such decisions.
Is the hospital upholding its right to ensure that an organ donor will follow through on his own post-operative care?
Or is the hospital denying a father his right to save his son?
The boy’s mother, Carmellia Burgess, shared her feelings Monday.
"As I type this I'm … watching my baby vomit constantly, cry from being in pain," she wrote on a GoFundMe page set up for the transplant surgery, "My son has a father who is ready and willing to give him a kidney, so Baby A.J. doesn't have to endure any deadly infections. But he's being denied that because of a recent arrest."
Emory says it is just following nationally accepted guidelines for approving donors. A.J.'s father, Anthony Dickerson, has a lengthy history of theft and forgery charges. The hospital delayed the surgery set for this month after Dickerson violated his probation and was arrested Sept. 28. He's since been released from jail, but hospital officials want to see three months of good behavior before they reconsider the surgery.
Essentially, the hospital isn’t convinced he’ll be responsible enough about his own health to ensure that he has a healthy recovery.
As A.J.’s story has gained national exposure, the hospital’s decision has come under sharp criticism from social media as well as within the medical community.
“In the face of a good match and a desperate need, there should be no delay,” said Arthur Caplan, head of medical ethics at New York University’s School of Medicine. “I see no reason why you would jeopardize a child’s life for some good behavior test.”
Robert Veatch, a medical ethics professor emeritus at Georgetown University, accused Emory of practicing “gross paternalism.” The mere suspicion that a person might not follow the regimen of care after surgery is not enough to risk a boy’s life, he said.
Andrea Young, executive director for the ACLU of Georgia, said, “It is wrong for Emory to prevent a father from saving the life of his own child.”
On Monday, an attorney for the family said they will be seeking another medical center to do the father's surgery. Emory was slated to perform the father's surgery. The boy's surgery is planned for Children's Healthcare of Atlanta at Egleston. That is where he is currently. "We've already received offers of assistance from other medical professionals," said attorney Harold Spence.
A.J.'s father had already been approved for the transplant surgery, passing months of medical tests that included blood work and drug tests, Spence said. But the timetable stopped after he was arrested Sept. 28 on charges of fleeing or attempting to elude a police officer and possession of a firearm or knife during the commission of attempted felonies.
The Gwinnett County Sheriff's Office, wanting to help him make the scheduled kidney donation to his son, released him from jail Oct. 2, in time for the surgery set for Oct. 3.
Then came a letter from Emory to the parents, saying it wants “evidence of compliance from his parole officer for the next three months. We will re-evaluate Mr. Dickerson in January 2018 after receipt of this completed documentation.”
Emory has declined to speak specifically of A.J.’s case, citing patient confidentiality laws. But the hospital released a statement highlighting the stress of recovery from kidney surgery for a donor.
"Removal of a kidney is major surgery," said the statement. "Recovery for a living donor entails consistent follow-up visits with the transplant team for approximately two years following surgery to ensure proper function of the remaining kidney and to avoid future health problems."
Spence said he received a clear explanation of the hospital's concerns during a recent talk with its attorney. The attorney said Dickerson's arrest raised concerns on whether he would follow the needed medical care after the transplant. "They said if he can establish a track record for behaving for three months … they might reconsider," he said.
He said Dickerson has a great incentive to take care of himself after the transplant: “So he can see Baby A.J. grow.”
A.J.’s story is somewhat reminiscent of the 2013 story of Anthony Stokes, a 15-year-old African-American from Lithonia who had been disqualified from receiving a heart transplant. At the time, Children’s Healthcare of Atlanta at Egleston offered only a vague explanation, saying he had a “history of noncompliance.”
A wave of public pressure turned that decision around, and he received a new heart. In 2015, Stokes died trying to elude Roswell police. The 17-year-old, whose rap sheet by then encompassed at least 11 arrests in DeKalb County alone, had allegedly forced his way into an elderly woman’s home and shot at her. He then stole another woman’s car and struck a pedestrian before crashing into a SunTrust bank sign, stilling his donated heart forever.
Emory is among the top 10 centers in the country for kidney transplants and performs more of them than any hospital in the state, according to the hospital. It’s decisions about organ transplantation are made in accordance with guidelines issued by the United Network for Organ Sharing. But Emory officials declined to cite any specific guideline or policy tied to this case.
Joel Newman, a spokesman for UNOS, said there is no guideline specific to organ donors on parole or probation. Ultimately, the final decision on transplants rests with the individual medical facility, though its actions could be subject to review by the organ-sharing network.
One of the guidelines calls for: “An assessment of the living donor’s ability to make an informed decision and the ability to cope with the major surgery and related stress. This includes evaluating whether the donor has a realistic plan for donation and recovery.”
In truth, A.J. Burgess has been fighting to live since he was born. The boy was born without both his kidneys, his mother said, and he requires 10 hours a day of dialysis and five bladder treatments a day. His mother does all that, having gone through training.
When he’s feeling good, he crawls around, talks a bit and plays much like other kids.
“Baby A.J. is doing as he always has done. He is fighting,” Spence said. “His tiny but brave body is fighting.”
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