Six years ago, Larry Black Jr. lay on an operating table at SSM Health Saint Louis University Hospital in Missouri, prepped for organ donation — despite not being declared brain-dead.

Then 22, Black had been shot in the head a week earlier, on March 24, 2019. According to KFF Health News, his heart was still beating, but with his family’s consent, doctors prepared to harvest his organs — until his neurosurgeon, Dr. Zohny Zohny, stepped in.

“In my opinion, no family would ever consent to organ donation unless they were given an impression that their family member had a very poor prognosis,” Dr. Zohny said, KFF reported. “I never had a conversation with the family about the prognosis, because it was too early to have that discussion.”

Black’s sister Molly Watts said the family had doubts after agreeing to organ donation — but felt ignored until Zohny intervened. Members of Black’s care team had told them he was at “the end of the road,” Watts said.

The family was urged to prepare for his “last walk of life” — a ceremonial procession, also known as an honor or hero’s walk, held before organ harvesting. Macquel Payne, another of Black’s sisters, said that while in the hospital room with him she had seen him blink his eyes and tap on the bed when she asked him questions. So she urged the staff to reevaluate him before proceeding.

“I’m like, ‘My brother’s in there tapping on the bed,’” Payne recalled, per KFF. “They said, ‘That’s just his nerves.’ But I’m like, ‘No, something’s not right.’ It’s like he was too alert. He was letting us know: ‘Please don’t let them do this to me. I’m here. I can fight this.’ They were saying that’s what the medicine will do, it affects his nerves.”

In Zohny’s first year as a neurosurgeon — what he calls “the riskiest time for you” — he knew he was putting his career on the line when he stopped Black’s procedure.

“The worst-case scenario for me is that I lose my job,” he thought at the time, KFF reported. “Worst-case scenario for him, he wrongfully loses his life.”

Flaws In The Organ Donation System

According to the Health Resources and Services Administration, 13 people die each day waiting for an organ transplant. One donor can save up to eight lives and enhance over 75 more. In 2024, there were more than 48,000 donations.

Still, the system has faced criticism. A recent federal investigation found that over four years, a Kentucky organ donation nonprofit had planned — though it ultimately didn’t move forward — to harvest organs from 73 patients who showed signs of neurological activity or alertness. In July, federal officials announced an initiative to reform the national organ transplant system.

“Our findings show that hospitals allowed the organ procurement process to begin when patients showed signs of life, and this is horrifying,” said Health and Human Services Secretary Robert F. Kennedy Jr. “The entire system must be fixed to ensure that every potential donor’s life is treated with the sanctity it deserves.”

Saint Louis University Hospital declined to comment on the details of Black’s case, but SSM Health’s Kim Henrichsen, president of Saint Louis University Hospital and St. Mary’s Hospital-St. Louis, pointed out the hospital’s “deep compassion and respect” when it comes to critical illness and end-of-life care.

Lindsey Speir, executive vice president for organ procurement at Mid-America Transplant, told KFF that the federally designated organ procurement organization for the St. Louis region does not comment on individual cases.

However, she noted the organization has withdrawn from organ harvesting when a patient’s condition improves, which usually happens long before they reach the operating room.

Speir added that recent media coverage has raised public concerns, and her team works to dispel myths and highlight the good the donation system does.

“We’re losing public trust right now,” Speir said, KFF reported. “And we’re going to have to regain that.”

Kevin Lee, president and CEO of Mid-America Transplant, wrote in an Aug. 21 blog post that a patient “must be declared legally dead by the hospital’s medical team before organ procurement begins” — a requirement he called non-negotiable.

In a statement to KFF, Lee explained that death can be declared in two ways: cardiac death is when the heart and breathing stop, and brain death is when brain function has irreversibly ceased.

But Zohny said neither applied to Black, and his patient had never undergone a brain death exam. Black, who spent 21 days in the hospital, woke up two days after Zohny’s intervention and the removal of sedation drugs.

What Remains Unknown About The Human Brain

Zohny left Saint Louis University Hospital when his fellowship ended later that year, but Black’s case stayed with him. It led him to question how little people truly understand about consciousness and highlighted the need to improve the organ donation system.

“There was no bad guy in this. It was a bad setup. There’s a problem in the system,” Zohny said. “We need to look at the policies and make some adjustments to them to make sure that we’re doing organ donation for the right person at the right time in the right place, with the right specialists involved.”

Zohny is now developing a method to measure consciousness, though he says it still needs extensive validation. To support his work, he recently founded a medical research company, Zeta Analytica, separate from his upcoming role at the West Virginia University Rockefeller Neuroscience Institute, which he begins in October.

Now 28 and a father of three, Black is focused on moving forward — but the trauma of being shot and lying in a medically induced coma still lingers. He suffers seizures when bullet fragments in his head shift and overheats easily due to his injuries. He still requires regular physical therapy.

“I had to learn how to walk, how to spell, read,” Black told KFF. “I had to learn my name again, my Social, birthday, everything.”

While he doesn’t blame his family for their decision, Black does question the organ transplantation process — and he no longer wants to be on the donor registry.

“It’s like they choose people’s destiny for them just because they have an organ donor ribbon on their ID,” Black said. “And that’s not cool.”