How Do You Ask a Dying Man to Accept a Pig’s Heart?
After all other life-saving measures had been exhausted, a new human organ seemed like the best answer for one very sick patient. But when that became impossible, there was only one thing left to try.
As soon as Narratively and Creative Nonfiction began planning Heart of the Matter, a series of essays focusing on the heart, I knew I’d want to include an excerpt from Dr. Bartley Griffith’s book-in-progress. I met Bart in the early 1980s — right at the beginning of the organ transplantation revolution. I was working on a book about the subject, and Bart was a young surgeon who immediately impressed me. He did so with his dedication and innovative, out-of-the-box efforts to save dying patients and reduce the growing shortage of donor organs. So, fast-forward a few decades, I was not surprised when Bart became the first surgeon to transplant a pig heart into a human — an astonishing achievement and a continuation of his early dream to end the donor organ shortage. It’s a joy to hear Bart tell the story himself, so you’re in for a real treat. Enjoy!
—Lee Gutkind, co-founder of Creative Nonfiction
My cell rang. It was Susan Joseph, M.D., the cardiologist who headed our heart transplant program at University of Maryland Medical Center, calling.
“I’m in trouble,” she said. “My patient is in shock and won’t make it through the night. I’ve done all I can do. His kidneys are failing, medicines are maxed, he is in and out of arrest. He is only 57, and he is going to die.”
“OK, Susie. I’m on my way to the CCU [critical care unit] now. Be there in three minutes.” I hoped she heard me, because she continued to describe her patient’s condition — “His BUN is 87, index 1.2, CVP 18, wedge …” — until the elevator doors closed and we were disconnected.
“Good, you’re here,” an exasperated looking Dr. Joseph said when I arrived.
She reported the patient’s hospital course from memory. David Bennett was suffering from diffuse heart failure brought on by multiple heart attacks. He had only been at UMMC for a couple of days, but he had been transferred from Meritus Medical Center in Hagerstown after a 10-day admission. Three years earlier, we had repaired a leaky heart valve to reduce the backflow of blood into his lungs. With additional scarring, the repaired valve gave way anew.
I entered his room quietly and was immediately struck by his appearance. He was pale — nearly stark white — while his lips, fingertips and earlobes were closer to an azure blue. This blueness occurs in patients when the heart cannot pump enough blood to the arteries, limiting oxygen to other parts of the body. Bennett would not survive the night without the help of extracorporeal membrane oxygenation (ECMO), a bedside life support system that temporarily replaces the function of the heart and lungs.
But we knew that ECMO was only a temporary measure. It was evident almost immediately that nothing other than a transplant of his heart could save his life. “His heart,” Dr. Joseph concluded, “is toast.”
Bennett was not awake enough to be able to give explicit permission for ECMO. But before he’d slipped out of awareness, he had indicated he wanted his doctors to do all that was possible to save him, including transplanting his heart, so I knew he was probably a yes. His family would be able to give the go-ahead we needed, but the CCU team had been unable to find them to discuss the matter. I’d learn later that he had been in and out of touch with his next of kin, his son, David Jr., for many years. Now that he was my patient and I would be responsible for our next steps, I wanted to try to connect with him personally. I spoke to him as I had to my newborns 45 years earlier, loudly and with hopeful inflection. “Dave, you’re stable now, but this machine beside you is doing the work of your heart and lungs. Your heart is very weak, and unless it unexpectedly recovers over the next few days, we are going to speak of options like transplantation.”
I hoped the news would stir more than the half nod I received. But this was enough reassurance to get him on life support so that our team could determine whether a heart transplant would be possible for him.
With Dave on ECMO, our transplant team — which included social workers, physical therapists, psychiatrists and medical insurance specialists, as is standard procedure for any transplant candidate — began to evaluate him. Over the next several days, Dave became more responsive to commands like, “Move your legs,” “Raise your head,” and, “Tell me how many fingers I’m holding up.” It was clear that his brain was improving. And because the machine was doing the work of his heart and lungs, he stopped requiring breathing assistance from the tube in his throat, so we were able to remove it for his comfort. He even began to answer our questions.
“Where are you?”
“In Hagerstown.”
“What month is it?”
“Yesterday … no, November.”
Both answers close!
The team worked in earnest now toward an emergency transplant. Donor hearts are distributed first to candidates in dire straits (though other factors, like geography and size are also involved in the decision-making process). Dave’s dependency on ECMO to keep him alive would put him at the top of the list, as would the fact that even ECMO was only a short-term solution. ECMO would work for about two weeks. After that, complications would pile on and it would begin to fail. On the other hand, his poor physical state made the likelihood of him receiving a precious donor heart a stretch. But after years of transplanting hearts and lungs to the sickest patients, I thought Dave’s relative youth and quick improvement of all but his stricken heart would earn him a thumbs-up.
Plans for transplantation were underway until Dr. Joseph called Dave’s cardiologist in Hagerstown, where he lived, to learn more about him. “He told me — and I’m not making this up,” she said in near disbelief — “that Dave is the worst patient he has ever had. Never follows up, no return appointments until hospitalized via the emergency room. He doesn’t even fill his prescriptions.”
I was surprised and disappointed. I could feel my optimism draining, my shoulders slumping. Dave’s lack of adherence to his medical treatment doomed him. Like most patients in treatment for serious illnesses, heart recipients do not survive unless they can reliably and regularly communicate with their caregivers and take their daily medications.
An urgent Zoom meeting with the heart transplant selection team was scheduled to figure out what to do next. They objectively followed the widely accepted guidelines for heart transplantation, which make a patient’s lack of adherence to medical care a hard stop. He was denied.
If there were enough heart donors, this medical triage wouldn’t have been necessary. But the reality is that, at any given time, there are many more people on the heart transplant waiting list than there are donor hearts. One million patients in the United States develop a failing heart each year, and only around 4,600 heart transplants are performed. The numbers just didn’t work for Dave. But now what could we do to try and save him?
I have been a heart transplant surgeon for 40 years and have performed more than 1,000 heart transplants. Through it all, I’ve learned the frustrating reality that I cannot, as much as I try, save all the patients that come to us for help. But there was one way to possibly save Dave Bennett and begin to find an answer to the growing dearth of donor organs.
I thought of the procedure my partner, Muhammad Mohiuddin, M.D., and I had been working on here for the past five years, a procedure that had never been done before on a human, one that many would have said just a few years ago was impossible.
Could Dave Bennett, I wondered, be the first person to receive a genetically humanized pig heart? I was determined to find out.
My first stop was Dr. Mohiuddin’s lab. Before becoming my partner, he had been recruited from the National Institutes of Health specifically to lead the scientific lab studies that would be necessary for the eventual transplantation of pig hearts into humans. Mohiuddin had devoted more than 30 years of his life to this moment — he teared up behind oversized glasses. “Bart, this is the dream of my life’s work, I never thought it would happen,” he said.
I headed to Dave’s room next. His eyes were dark and they tracked my entrance. His full head of white hair was predetermined to a punk style, and he appeared pinker than he had prior to ECMO. Despite that, though, his gown sagged over him and he looked like a skeleton. He hadn’t been out of bed for four weeks and was a nutritional wreck. I was shocked to find that I could easily wrap my thumb and forefinger around his lower leg at mid-calf.
“Hey, Dave, how’s it going?” I asked. “You seem to be better with those hoses pumping blood to help your heart.”
I pulled a folded stool from its wall holder and opened the small circular seat, sidling up next to Dave’s bed. I continued with my one-way small talk. It was clear that Dave’s illness made him less conversational, but I was sure he was following.
“So, here is where we are. The big transplant group met and unanimously felt you were not a candidate for a heart transplant.” Sympathetically I added, “Your medical condition is poor, and that alone would be likely enough to exclude you. But Dr. Joseph, who treated you, called your doc at home and learned you weren’t very good about taking medicine and scheduling appointments.”
I waited for him to deny, protest or make an excuse, but none followed. I sensed he may have been forewarned of the committee’s decision by one of the heart doctors.
“All this medical stuff in your room is barely keeping you going,” I continued. “We believe that your heart is so sick that we won’t be able to get you home or to rehabilitation or even to another hospital closer to Hagerstown.”
He stopped blinking. His stare was spooky considering my message.
“Do you get that? You will not leave this unit alive?”
More staring.
“Unless … Dave, there is a chance you could have an experimental transplant.”
I feared the outright mention of a pig heart would be off-putting, so I eased my way in. “We have been testing animal hearts as a substitute for human ones in the lab,” I started. “We have had more than nine months of success.”
His mouth opened to a dry tongue. He whispered, “What kind of animal?”
There it was, the question I’d been expecting and fearing. “A pig,” I managed to get out. I squeezed the stool and waited for a shocked or enraged reply.
He just stared at me slack-jawed, his dark-ringed eyes sunken. It was as if I had turned a toy’s electric switch off mid-performance. This continued for what seemed like minutes but I know was only seconds.
Finally, his vacant eyes seemed to come to life and he looked at me like a puzzled child. He positioned his jaw to speak, and out came a clear, “Will I oink?”
I was unprepared for his comic punch. I belly laughed and parried, “Don’t know, we never did this before.”
He looked at me with a mischievous smile and said, “Are you sure I can’t have a human heart?” He would ask me about this again and again, almost daily.
I shared more about the procedure with Dave. I told him that the pig we would use was not a mere pig that we snatched from a farmer’s barn. Rather, it was one that had been genetically modified to make its organs less likely to be rejected by the human immune system after transplantation. I told him that the animals are raised in a pathogen-free facility in Blacksburg, Virginia, by Revivicor, a subsidiary of United Therapeutics, which was founded and led by Martine Rothblatt. That Martine, who had co-founded Sirius Satellite Radio, had stepped down as CEO and later sold her shares in order to develop drugs to treat her then-7-year-old daughter, Jenesis, who had a rare, incurable lung disease. When that didn’t work, she took matters into her own hands and started United Therapeutics, eventually leading to not only the development of the drug that saved Jenesis but also experimentation with pig xenotransplantation. Working with Martine, we first began to transplant pig hearts into baboons, and by 2020, a humanized pig heart was in the production line. This is the pig heart that Dave, if he agreed, would receive.
Now, we needed to explain to the Food and Drug Administration (FDA) that Dave was dying in the ICU and did not have the option of a human heart transplant — and, with Dave’s consent, convince them that our research would support an experimental transplant. After struggling for 10 days with the staff at the FDA on four drafts, we sent our final 30-page application for an emergency use of the altered pig heart on December 30, 2021. Only a day later, my wife, Deni, and I were preparing a mini feast to celebrate the New Year when, at 5:32 p.m. — yes, I remember the time exactly — my computer announced with a ding that I had a new email. I was into my second glass of sparkling wine before I read the message from the FDA. I reread it three times. “You are approved to proceed with the experimental transplant,” it said. I was stunned. I felt a heavy challenge and responsibility. I would need to put my 40 years of lessons treating worn-out hearts to a new kind of test.
What followed was a whirlwind. We needed an emergent educational program to address the risk of the pig heart spreading an animal virus. The ongoing Covid-19 epidemic had made hospital beds a priority for patients sick with the virus, and transplanting a pig heart into a single patient, unrelated to Covid, could be perceived as excessive. Our hospital and medical school are distinct entities — both would need to partner with us — and we had to get sign-off from multiple committees. Hospital lawyers needed to be clear on the liability. Also up in the air was who would pay for this procedure and lifelong care if it worked. Would the hospital assume financial responsibility? Could they afford to?
Eventually, we were able to reach David Jr., who came through as his dad’s medical decision-maker, no doubt an interesting cause for a reunion. Our ethicists stressed that both father and son needed to understand that this procedure likely wouldn’t give Dave Sr. a long lease on life, but rather would help doctors gain knowledge for the future. David Jr. assured us they got it. “My dad doesn’t want to die,” he told us. “He had hoped for a standard transplant, but he gets why his past prevents one.”
On January 6, 2022, there was a late afternoon meeting with the hospital’s board of directors and a number of other important decision-makers. The discussion focused on fiscal risk that might continue indefinitely if Dave survived, and the risk to the hospital’s reputation for allowing an experimental operation with an animal organ during peak Covid. My chief of surgery, Christine Lau, M.D., argued our cause. Mentally, I prepared for the worst, assuming I’d have to tell Dave that we had tried but failed to get all the necessary approvals. Instead, I heard Christine say, “You’re on — maybe best to do it right away before someone changes their mind.”
We made plans to proceed at morning’s first light.
By the time of the surgery, Dave Bennett had been on ECMO for 42 days. On his way into the operating room, he asked for the very last time, “Doc, are you sure I can’t have a human heart?”
I was surprised and amazed by his persistence. “No, Dave, but we can still cancel the pig heart if you want …”
His response? “Well, if I don’t make it, you may at least learn why.” I might have dropped to my knees if I hadn’t been pushing him into the operating room. He was willing to use his body for the benefit of others — remarkable.
Around seven or eight hours later, on January 7, 2022, Dave awoke with a pig’s heart inside his body. He survived 60 days, with the organ functioning well for weeks before a sudden onset of heart failure that he clearly wouldn’t be able to recover from.
Still, it was long enough to reunite with his family, watch the Super Bowl on TV and sing along with R&B singer Jhené Aiko as she performed “America the Beautiful” during the pregame ceremonies. They were hopeful days for Dave and our medical team, after so many years preparing to attempt this outside-the-box procedure. A procedure that we had hoped would save Dave’s life — and the lives of many others who might otherwise have died while waiting for an organ transplant.
About a year and a half after Dave died, using all the knowledge we’d gained from our experience with him, we performed a second successful pig heart transplant, on another patient deemed ineligible for a traditional transplant, Lawrence Faucette. Lawrence, who had end-stage heart disease, survived for almost six weeks with his new heart before it began to show signs of rejection and he, too, died. His last wish was for us to make the most of what we’d learned from our experience, and we’ve been working at it ever since.
We hope a third transplant will occur soon, and then more after that until we can significantly close the gap between the thousands of patients in need of a donor organ and those available. I dream that this happens in my lifetime, but one thing I know for sure is that we wouldn’t be where we are today — actively making progress — without the bravery and sacrifice of Dave Bennett.
“We are grateful for every innovative moment, every crazy dream, every sleepless night that went into this historic effort,” David Bennett Jr. said in a statement shortly after his father’s passing. “We hope this story can be the beginning of hope and not the end.”
This piece is the third in our series, Heart of the Matter, a special collaboration from Narratively and Creative Nonfiction that explores love and matters of the heart. You can learn more about this special series and check out the rest of the stories as we publish them here.
This is an excerpt of Dr. Bartley Griffith’s book in progress. It captures his evolution as a transplant surgeon, and his journey to find options to save the lives of the sickest of his patients and to respond to the ever-growing list of patients waiting and dying for rare donor organs. Before joining the University of Maryland in 2001, Dr. Griffith practiced at the University of Pittsburgh, working with the transplant pioneer Dr. Thomas Starzl.
Lee Gutkind has been called the “Godfather behind creative nonfiction” by Vanity Fair. He founded the groundbreaking literary journal Creative Nonfiction — the first literary journal devoted exclusively to the creative nonfiction genre. He’s the author or editor of more than 30 books, including Many Sleepless Nights, in which he captures the story of the evolution of organ transplantation.
Jesse Sposato is Narratively’s executive editor. She also writes about social issues, feminism, health, friendship and culture for a variety of outlets. She is currently working on a collection of essays about coming of age in the suburbs.
Meghan Linehan is an illustrator based in Brooklyn, New York. She enjoys observing the world and telling stories through simple lines. Meghan illustrates under the name @sawwft.
Fascinating and well written excerpt. It's brave people like these doctors and patients who are willing to think and live outside of the box in order to help the medical community find answers. I'm so grateful to know there are humans out there who keep trying, sometimes against all odds. Bravo.
Thank you for an excellent article. I was reared in a physician’s home - my grandfather’s. He would be amazed by what can be done today.
I wish the anti-science people had not gotten to my father immediately before he died and convinced him to rescind his donation of his body. He was an interesting cancer case and a lot could have been learned.
I hope some day we can harvest our own stem cells and grow our own organs. I hate the thought of breeding a living being for the express purpose of harvesting its organs, though I would certainly do it to save my child. And it is what we do in farming them, isn’t it?
Thank you for the thought-provoking piece.