During a recent hospital visit, Lev’Veon Jones-White received a wooden case representing a life changing, half-year journey.
Inside: a figure of red-armor clad Iron Man, who like 10-year-old Lev’Veon, was known as a courageous superhero.
Next to it were two pumps that had been inside Lev’Veon’s body for 24 days, keeping him alive after the healthy and active fifth grader experienced a sudden cardiac arrest that baffled his family and doctors at University of Michigan Health C.S. Mott Children’s Hospital.
In less than 24 hours, the competitive swimmer, football player and trombone player had gone from eating ice cream and running around at his sister’s birthday party to lying in a hospital bed with a failing heart.
Lev’Veon’s circumstance was so dire that Mott cardiology teams could only consider one option, but it involved a high risk procedure that had never been performed on a child before in the state: a total artificial heart implantation.
“This was the worst case of myocarditis most of us had ever seen in our entire careers. In just hours, Lev’Veon went from a thriving 10-year-old to flatlining in our ICU,” said David Peng, M.D., pediatric cardiologist and the director of pediatric heart failure and mechanical circulatory support at Mott.
“We quickly determined that none of the interventions we’d normally use would work for him. The extreme measure of using a total artificial heart was the only possible answer. We knew it would be a huge uphill battle, but everyone was willing to do whatever they could for Lev’Veon. We knew he was fighting and we were going to fight alongside him and for him.”
“It was a true ‘Hail Mary.’”
In fall of 2024, Lev’Veon unwittingly become one of the smallest and youngest patients in the world to ever receive the device and the first child to undergo the procedure successfully in Michigan.
“I’m thankful for all the nurses and doctors,” Lev’Veon said.
From celebrating a birthday to being on life support
Lev’Veon’s stepmom, RayVonia White, says the whole episode still feels like a blur.
Lev’Veon had spent a hot August day at his sister’s birthday party, racing through sprinklers and playing “the floor is lava” game.
But around midnight, he complained of chest pains and started looking weak, prompting her to take him to the emergency department at Mott “just to be safe.”
“He had no history of health issues, but I didn’t want to take any chances,” she said.
“I tell people now, ‘always listen to your kids. Always listen to your instincts.’"
Mott pediatric cardiology teams did a thorough examination, including an echocardiogram showing Lev’Veon’s heart function was normal, but because of subtle changes in his heart’s electrical activity, they decided to keep him overnight out of an abundance of caution.
Within hours, Lev’Veon started experiencing frequent arrhythmias that rapidly escalated, landing him in the pediatric intensive care unit.
“He was just watching TV and talking when his heart just completely stopped,” White said.
“It was like a scene from a movie. More than a dozen people rushed into our room all at once.”
For nearly an hour, Mott medical teams took turns providing Lev’Veon with CPR, which doctors credit for preventing any damage to his brain. But his heart never came back and he was transitioned to life support via ECMO.
Lev’Veon’s kidneys and liver quickly started to deteriorate, as his lungs filled with fluid and pools of blood collected in his heart from the lack of circulation.
This was the worst case of myocarditis most of us had ever seen in our entire careers. In just hours, Lev’Veon went from a thriving 10-year-old to flatlining in our ICU."
-David Peng, M.D., pediatric cardiologist and the director of pediatric heart failure and mechanical circulatory support at C.S. Mott Children's Hospital
Doctors believe he had developed an extreme case of inflammation called acute myocarditis, a poorly understood illness in which an unknown trigger causes the body to attack its own heart and heart muscle.
The condition is often temporary and resolves on its own. But in Lev’Veon’s case, his heart continued to get worse, showing no signs of recovering.
He needed a new heart, but his body wasn’t strong enough after the arrest.
Typically, a heart assist device could be used as a bridge to a heart transplant, but that strategy requires the heart to do some of the work.
Lev’Veon’s heart was “completely dead,” Peng said, taking those options off the table.
The family was counseled that the risk of severe complications or death were extremely high for the total artificial heart.
“It was soul-shaking,” White recalled.
“They told us they had the confidence to try this but it was something that had never been done here. There was no guarantee it would work and the outcomes weren’t great.
“We said ‘do whatever you need to do to save our baby.’ We just put all our faith into them.”
An adult-sized device in a child-sized body
The SynCardia Total Artificial Heart is designed for adults and rarely used in children.
The device involves pumps that are surgically placed in the chest, replacing the damaged heart's ventricles and valves, allowing blood to flow normally through the body.
A day after Lev’Veon’s cardiac arrest, the Mott heart team began preparing for the center’s first-ever pediatric total artificial heart surgery.
“This was a massive, multidisciplinary undertaking,” said Tim Lancaster, M.D., pediatric heart surgeon at Mott who led the surgery.
“We mobilized everyone. Every single specialist in our heart center essentially played a role in this case.”
Lev’Veon Jones-White and stepmom, RayVonia White, surrounded by members of the pediatric heart transplant team. Credit: Robert Coelius, Michigan Medicine
Lancaster remembers calling representatives at SynCardia, enlisting their help to fast-track approval and access for the device.
The company immediately set the wheels into motion.
It meant around-the-clock training for everyone involved, from surgeons and nurses to anesthesiologists and perfusionists who manage the ECMO machine.
Using CT scans and 3D medical imaging, teams virtually practiced the implantation and how to position the device, consulting with colleagues on strategies to fit the adult-sized device in Lev’Veon’s child-sized body.
And just four days after that first phone call to the device company, Lev’Veon was wheeled into the operating room.
“I’ve never done a procedure with more people in the OR than this one, representing all specialties needed to make sure Lev’Veon got the best care possible,” Lancaster said.
The surgery lasted roughly nine hours, with Lancaster first removing Lev’Veon’s listless heart from his body while he remained supported by an external heart lung machine.
Lancaster then began sewing the total artificial heart’s two pumping chambers and four valves that mimic a regular heart into Lev’Veon’s chest to replace them.
The pneumatically powered pump connects to an external console that acts as the driver pumping blood in and out of the chambers.
Once all was in place, Lev’Veon was converted from the heart lung machine to 100% support from the artificial heart.
“That was the moment of truth,” Lancaster said.
“We were all holding our breath to see if the device was going to work.”
It didn’t take long to get the answer, as Lev’Veon’s body immediately responded to the artificial heart and his organs began recovering.
Lev’Veon received a case with the total artificial heart device that was used to save his life, along with Iron Man, one of his favorite superheroes. Credit: Robert Coelius, Michigan Medicine
His blood circulation became normal and his kidneys regained function, allowing him to go off dialysis within days.
His lungs and breathing improved.
Eventually he was able to take out his breathing tube and start eating and swallowing again with the help of physical therapists and dieticians.
“It worked miraculously,” Lancaster said.
“This device helped him become a stronger healthier kid ready to make the next step of a heart transplant.”
“Just knowing our team could come together to take on such a complicated procedure with so much risk and give Lev’Veon a chance to live a normal life was meaningful for all of us,” he added.
Returning to a new normal
After three weeks, his family learned that a donor heart was available, and Lev’Veon underwent a heart transplant at the end of September.
“It’s so overwhelming and so much to take in at once. You cry. You try to be strong, you try to listen. It’s a roller coaster of emotions to go from having a completely healthy child to one who needs a new heart to come home,” White said.
“There are so many big feelings all at once. We’re so grateful. Grateful for the family and friends who supported us through all of this and grateful for the amazing U-M teams, from the surgeons and doctors and nurses to the dieticians and Child Life teams who were there for us and cared so much about Lev’Veon."
Finally on Oct. 23, Lev’Veon walked through a Mott hallway lined with cheering nurses and providers as he reached the elevators to go home after two months of hospitalization.
Just before Heart Month in February, representatives from SynCardia visited Lev’Veon during an appointment, gifting him a box with the artificial heart pumps that were used to save him and an action figure of Iron Man, one of his favorite superheroes.
He’s still recovering with some limitations and adjusting to new medications and routines, but White says he’s looking forward to returning to in-person school with his friends and favorite hobbies like swimming later this year.
The family, which includes Lev’Veon’s father, Antwan White, sisters Layla, 7, and Lanae, 3 and baby brother Legend, 1, is even planning their first big vacation together.
“Lev’Veon is the light in the room. I tell him he’s a rock star and so strong to go through all he went through,” she said. “We’re still getting used to the new normal, but he has a new heart and we know he will go back to being 100.
“We want him to have everything he wants out of life and tell him he can do whatever he sets his mind to. And we’re going to make so many more memories together.”
