A Michigan first: 10-year-old Ypsilanti boy lives 24 days with total artificial heart

Yahoo

27-03-2025

Lev'Veon Jones-White ran, climbed and jumped alongside his siblings and cousins at the McDonald's Indoor PlayPlace in Belleville on an evening in late February. He laughed and chased one of his cousins into the enormous maze of tunnels and tubes.
To watch him play, it would be easy to presume Lev'Veon is an ordinary, strong and healthy 10-year-old boy, but he is anything but ordinary.
Lev'Veon — an athlete who swam competitively and played football and the trombone — nearly died in late August, when his heart suddenly stopped.
The staff at C.S. Mott Children's Hospital in Ann Arbor performed CPR for 60 minutes and then put Lev'Veon on a heart-lung bypass machine called extracorporeal membrane oxygenation, or ECMO, when it was clear his heart wasn't going to restart. Ordinarily, ECMO can keep a person alive long enough for the heart and the lungs to recover.
But in Lev'Veon's case, the heart that once sustained him, pumping blood throughout his body with rhythmic beats, withered and died. His kidneys failed and his lung function began to decline, too.
Left with few options, the doctors did something that had never been done before in a child in Michigan: They removed Lev'Veon's heart and replaced it with a totally artificial heart that kept him alive for 24 days — long enough for his kidneys and lungs to rebound and for him to get a human heart transplant.
"He was one of the smallest and youngest patients to have ever received one of these total artificial hearts worldwide," said Dr. David Peng, director of pediatric heart failure and mechanical circulatory support at Mott.
Although the University of Michigan Health had implanted the SynCardia Total Artificial Heart in adults, they had never tried to use the device on a child.
Lev'Veon's resilience through the entire ordeal was "remarkable," Peng said.
Months later, as Lev'Veon played with his cousins and siblings, he lifted his shirt to show the scars that pock his belly and chest.
"I'm not special, but I am lucky," he said. "I'm so happy that I got the tubes out. It hurted a little bit."
Lev'Veon spent his littlest sister's 3rd birthday playing in the late summer sun. He went to football practice that day and then joined his family in his sister's favorite game: pretending the floor is lava and jumping onto obstacles to avoid the make-believe molten rock.
At bedtime, Lev'Veon couldn't get comfortable.
"It was time to lay down, and I had this big, bad headache ... and then, my stomach kind of hurt," Lev'Veon recalled.
His stepmother, RayVonia White, 30, of Ypsilanti, said she told him to close his eyes and try to relax.
"When I went back and checked on him, he was crying," she said.
Although he doesn't have asthma, Lev'Veon told her that he couldn't breathe. His chest hurt.
White works as a medical assistant at Packard Health and knew his symptoms could be serious. She put him in the back seat of the family's car and took him to Mott.
"When I got to the hospital, I felt lightheaded," Lev'Veon said. "I didn't feel like I could breathe, so I had to use a wheelchair. And then, when I got to the room, I threw up."
The emergency department staff monitored Lev'Veon's heart and noticed some blips on his electrocardiogram (ECG).
"They did see some subtle ECG changes," Peng said. "So, with the chest pain, they observed him overnight. We actually got an echo ultrasound of the heart out of an abundance of caution, and at that time, the first echo was completely normal.
"He was actually going to be discharged the following morning, after some observation, but he started having more ECG blips and abnormalities, and then some arrhythmias that rapidly progressed."
Lev'Veon was moved to the cardiac intensive care unit, where, Peng said, he "progressed to full-blown cardiac arrest."
White said she'll never forget the moment when Lev'Veon's heart monitor flat-lined.
"I was sitting down, talking and crocheting, and keeping my husband up to date with everything," she said, as Lev'Veon sat in his hospital bed watching YouTube.
It was about 7 or 8 a.m., and they'd been put in an isolation room because White was recovering from COVID-19. A nurse had just come in to talk with Lev'Veon about ordering breakfast.
"The nurse kept coming in and checking on things," White said. The nurse was growing increasingly concerned and was watching the heart monitor intently.
Then came the flat line.
"He coded," White said, and the nurse pressed a button to call for help. "When she pressed that button, so many people came flooding in. So many people, it was like a movie.
"I was crying ugly tears. ... Everybody was around Lev'Veon, and they were pushing on his chest and lining up to take turns for who would be next doing CPR."
It wasn't long before White was whisked out of the room so they could continue their efforts to save Lev'Veon's life.
"When you think about heart attack, you don't think about a 10-year-old kid who is otherwise healthy," said Dr. Timothy Lancaster, assistant professor of cardiac surgery at the University of Michigan and the pediatric heart surgeon who operated on Lev'Veon.
"The little guy's parents were astute enough to know that he's saying something doesn't feel right, so we're going to take him to the emergency department at Mott. That doesn't always happen. A lot of times kids say their chest hurts, and parents say, 'Maybe you should just sit down and have a drink of water and you'll be fine.' "
Lev'Veon had developed myocarditis, which is a dangerous type of heart inflammation that was most likely triggered by a virus — possibly by the coronavirus that had made his stepmother ill, Lancaster said.
"This could happen to anyone," he said. "It's an equal opportunity kind of disease. Any healthy kid, any healthy person could have the bad luck of getting a virus that provokes their inflammatory response, their immune system to do this, and that's very scary.
"I have kids around this age. Lots of my partners and colleagues have kids around this age, and I think it hits home a little harder when we see a kid come ... from our community who could be any one of our kids and be thrust into this life-or-death situation."
When their attempts to resuscitate Lev'Veon's heart failed, the team at Mott quickly worked to connect him to ECMO, Lancaster said.
"Most patients who have myocarditis ... will recover," he said. "The heart will kind of heal itself and the inflammatory process will subside. But in the first three or four days, it became evident to us that his case was different than the average case."
The ECMO wasn't supporting Lev'Veon's circulation well enough to keep his kidneys and lungs healthy. He was too fragile to undergo transplant surgery. The thought was that if they could implant a total artificial heart, it might allow Lev'Veon time to get stronger so he would be ready for a transplant when a matching donor heart became available.
"So, we started mobilizing to try to do this total artificial heart idea, which was new for our center, so it required a lot of logistical planning and preparation and education," Lancaster said.
Peng said it was an extreme measure, but "we knew that Lev'Veon really didn't have any other options.
"Our entire heart center — from surgeons to cardiologists, nurses, to therapists — got on board with trying this. It's not too far-fetched to say this was a Hail Mary for Lev'Veon. And everyone, within a couple days, was trained and learned this new device so that we could implant it in Lev'Veon and take care of him."
At just 90 pounds, he would become among the smallest — if not the smallest — in the world to have the implant, Lancaster said.
"He is kind of a tall, skinny guy with a narrow chest," Lancaster said.
On Sept. 6, the day Lev'Veon got his total artificial heart, his entire family came to the hospital — his father, Antwan White; Lev'Veon's sisters, Layla and Lanae, his brother, Legend, his grandmother, Annette Dukes, his cousins, aunts and uncles.
"They let friends, and all of our family come up, even though it was past visiting hours," White said. "We had the whole lobby full, and my pastor came up to pray. ... One of my favorite aunties brought food and others brought pizza, and they were trying to make sure I was eating. You kind of forget to eat.
"So many people really came out in our time of need."
Lev'Veon, she said, wasn't scared. She tried not to be, either.
Doctors told the family that the total artificial heart was Lev'Veon's best chance.
"They explained to us that they have a solution, and that with this solution, no kid in Michigan had ever done it before," White said. "The doctors said it would work if it could fit. They don't make these in a kid's size. ... They were saying that they were confident that they could do it.
"I had to be confident they could, too. You don't really have a choice, you know? ... I had my faith. I was praying about it, and I was willing to do anything to help save my baby. I had to have confidence in them and faith in my Lord to see him through."
As the medical staff wheeled Lev'Veon into the operating room for surgery, White said, "I didn't say goodbye. I told him I'd see him later, and that he was going to go in for surgery and that I'd be there waiting for him. I took a picture with him."
The surgical team at Mott prepared for the procedure with the help of the SynCardia's medical representatives and Dr. David Morales, director of pediatric cardiothoracic surgery at Cincinnati Children's Hospital, who had successfully implanted total artificial hearts in other kids. U-M physicians Dr. Francis Pagani and Dr. Jonathan Haft, who had implanted the devices in adults, also assisted during the procedure, Lancaster said.
They strategized about how they would get the large device into Lev'Veon's small chest, and how to connect the artificial heart to his vasculature so it would work properly.
The first step was removing the heart that was no longer beating inside of Lev'Veon and sewing connections into the cuffs of the right atrium, the left atrium, the aorta and the pulmonary artery, Lancaster said. They then connected the ventricles of the artificial heart to those cuffs.
"It really was like a complete replacement of what the normal heart anatomy is, just in an artificial way," Lancaster said. "The last part of the operation was transitioning from the heart-lung machine to the support of the total artificial heart.
"We were holding out hope that it was going to work. And it actually was surprising ... how well it worked."
The final task was to determine how to close Lev'Veon's chest with the large artificial device inside.
"We basically had to lasso the device around the ribs in Lev'Veon's left chest to kind of pull it out of the middle left chest in the space where the left lung sits, to close ... his breast bone, over top of the device," Lancaster said.
"With those maneuvers, we were able to get it closed that day in the operating room, which was awesome and unexpected. ... To be able to get it closed the first day reduces the chance of this device getting infected. If he had an infection in that device, then it's kind of game over after that."
The artificial heart, he said, was attached with tubes to an external machine that used air pressure to force blood through Lev'Veon's body. When it's running, it's noisy.
"It's like a very repetitive, rhythmic, loud pumping sound, and I think that the patient can feel that as well. I think it feels like they've got a motor, an engine, running in their chest," Lancaster said.
"I spent the whole time feeling so bad for this boy because he went from being a normal kid sitting in his hospital room to waking up almost two weeks later with this kind of incessant device thumping away in his chest, which must have been terrifying. But he seemed to acclimate to it surprisingly well."
When the Whites saw Lev'Veon again after the surgery, his artificial heart was beating, keeping him alive.
"He got all these tubes hooked up to this big machine and it's loud," White said. "So when you're walking down the hallway to get to his hospital room, you can hear it."
But to her, it was the sound of hope.
Doctors were thrilled to see Lev'Veon's health quickly improve with the total artificial heart.
"He was incredibly well supported ... much better than we had ever hoped he would be," Peng said. "We had originally even thought he needed a heart and kidney transplant, but his kidneys started perking up as soon as the total artificial heart was in and pumping.
"He was able to come off of dialysis and his kidneys returned to normal function. He was able to (have his breathing tube removed) so his lungs were in great shape, and then he was able to eat and rehabilitate, even on the total artificial heart. He participated in exercises to get strong enough for the surgery."
On Sept. 30, White got the call that a matching donor heart had become available for Lev'Veon. She was at work.
"My boss actually took me home, and I went up to the hospital," she said. The plan was to take him into surgery at about 1 a.m. Oct. 1.
"I got to see him and got to hold his hand," she said.
Although the total artificial heart was much better at circulating Lev'Veon's blood than the ECMO was, it caused an inflammatory reaction in his chest, Lancaster said, along with scar tissue.
"We prepared for that," Lancaster said, but still, "it was definitely more challenging than the average transplant."
Ultimately, though, the transplant operation went smoothly.
"The new heart worked great," Lancaster said. "We thought there was a chance that he may need to go back on dialysis after the transplant and that his kidneys might not like another hit of being on the heart-lung machine. But he progressed beautifully after that."
When Lev'Veon came out of the surgery, he was drowsy, White said.
"I said, 'Hey, baby,' and I gave him a hug," she said. "I told him. He did it. He's got a heart now and he was going to feel a lot better."
And Lev'Veon did.
He underwent physical therapy to rebuild the strength he lost during his long hospitalization.
"Remarkably, he trusted everyone, and he did everything he needed to do to recover," Peng said. "It took a few days for us to get the breathing tube out, and he patiently endured that, and then just step by step, he was able to work with us and and recover. He was remarkably calm and just an incredibly resilient kid.
"He was able to be discharged on Oct. 23. ... That's actually faster than most of our patients who go through transplant who hadn't received a total artificial heart. That's faster than average for us."
On the day he left the hospital, his medical team and representatives from SynCardia gave him the mechanical heart that kept him alive inside a wooden display box along with a plaque and an Iron Man figurine.
Lev'Veon was able to return in January to the fifth grade at Owen Intermediate School in Belleville. A month later, he started playing trombone again. Soon, he hopes to be back in the pool, swimming freestyle.
"He is the life on a party," White said. "Everybody loves Lev'Veon. When I walked in with him on his first day back at school, the kids all said, 'It's Lev'Veon! It's Lev'Veon!' He walked in, and he ditched me."
White said she hopes to one day be able to thank the family who made the choice to donate their child's heart so her Lev'Veon could get another chance at life.
"Some way, somehow I'd like to show our respect and show them that we honor the donation, and show them that we appreciate it," White said. "When I gained something, they lost something."
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This article originally appeared on Detroit Free Press: Michigan boy believed to be smallest to ever get artificial heart