The device is about the size of a AA battery, and it has the potential to help a baby or infant heart keep beating in the face of failure.
It's called the PediaFlow, an implantable artificial heart for the littlest, most vulnerable humans. James Antaki, a biomedical engineer at Cornell University in New York, has been developing this medical device for the last two decades.
As of last spring, it was in the final stages of research and manufacturing before clinical trials, funded by a $6 million, multiyear grant from the Department of Defense.
"There is so much potential in this," says Antaki, who keeps a prototype of the device in his pocket, like a security blanket. "It's so close to being used to save lives in children."
About 1 in 100 children in the U.S. is born with a congenital heart defect. But for babies or young kids with the most serious ailments, there is no artificial heart specifically designed for them. The Food and Drug Administration has identified this as an area of critical medical device need.
But in April, the Trump administration canceled Antaki's federal grant as part of a sweeping punishment of elite colleges and universities for what it considers civil rights violations and failures to counter antisemitism on campus. In total, about $10 billion in grants were canceled, including roughly $250 million for Cornell.
"We feel like collateral damage," says Antaki, who doesn't see the link between what he's working on — medical device research — and accusations of campus wokeness or antisemitism. "There is no reason to punish us. We're trying to do good in the world."
Meanwhile, regular people, far from Washington, D.C., and far from the campuses where the research is taking place, are affected by those decisions.
A 4-year-old in heart failure
In a hospital room on the sixth floor of Children's Hospital of Philadelphia, Nora Strickland hands her son, Caleb Strickland, a blue popsicle. It quickly turns his entire mouth — his lips, his tongue, even his teeth — a bright shade of cobalt.
Caleb, 4, is a big fan of the blue flavor, which is lucky since it's the only flavor the nurses stock here.
Caleb is in heart failure after a virus in the spring wreaked havoc on his already weak heart. He and his family have been living in the hospital since May so that an artificial heart pump, or VAD, can keep him alive while he waits for a transplant. That could take up to a year, if he's lucky.
"Mom?" Caleb asks. "What does a VAD stand for?"
Strickland explains to her son that, because he was born with a congenital heart defect and has only one ventricle, he needs a ventricular assist device — or VAD — to keep his heart pumping.
The device, about the size of a hockey puck, is filled with blood and hangs from his skinny frame.
Most babies and toddlers in heart failure in the U.S. who require a ventricular assist device use a Berlin Heart, which is outside the body, since there is only so much room in a child's chest cavity. The power source for the device is on wheels, weighs more than 100 pounds and can be unplugged for only 30 minutes.
After lunch, it's time for art in the hospital's playroom, down the hall. It's a bit of a production to be on the move, considering how many objects have to accompany Caleb.
"I'm gonna unplug Taco," Strickland says, "and you're going to have to push Broccoli."
Caleb has nicknames for the machinery attached to him. The large power source is Taco Bell. The wheeled pole with all his blood-thinning medicines is Broccoli, and his heart pump — or VAD — is named Henry, after his favorite Thomas the Tank Engine character. These are his constant companions.
"We have to take them because look," says Caleb, lifting up his shirt. "They're connected to me. See? This is my VAD, and it helps my heart. Let's go!"
They have 20 minutes to get down the hall and get plugged back into the wall before an alarm goes off.
"Could be worse, Mom!" Caleb says.
"It could always be worse, bud," Strickland replies.
But later, Strickland told me, it could also be better.
If her son could have a portable implant like the one that Antaki was working on, "Caleb could go to the playground. He'd be home, and he'd be out and about. He wouldn't need to be plugged into a wall, and he wouldn't be tethered."
This hospital room feels far away from the Trump administration's disputes with universities, and she says her family is being impacted by decisions and policies they have no control over.
She wants to know why research that could help families like hers would be canceled.
In an email to Antaki in April announcing the stop-work order, a grant officer at the Department of Defense — which facilitates the grant — told him that the cancellation was "at the direction of the Administration" and provided no further details. Antaki's follow-up emails got a similar explanation: "These actions have been directed to us by the administration."
This summer, when the FDA added pediatric ventricular devices to its medical device shortages list, I reached out to the Department of Health and Human Services about canceling a grant focused on developing just that.
In an email, Andrew Nixon, director of communications at HHS, did not comment on Antaki's grant but wrote: "Ensuring the public has access to safe and effective medical devices is a top priority for the FDA."
What happens next with innovation?
For the doctors working with young children in heart failure, innovation in the devices that keep those little hearts beating can't come fast enough.
"This deserves our attention, this deserves our resources, this deserves people working together," says Jonathan Edelson, a pediatric cardiologist at the Children's Hospital of Philadelphia and the medical director of the Heart Function, Transplant, and Ventricular Assist Device Program. "We know that those tiny patients need devices that are smaller and better compatible with their bodies."
He says the VAD that Caleb is on works extremely well for children, despite the drawbacks that it is outside the body and needs an external power supply.
"Kids can't go home on it, which is, you know, even harder than the limitations in mobility," he says. "It's something that I hope will not be a forever thing."
Edelson says he is optimistic about discoveries and innovations in his field. His hospital is currently part of a clinical trial where young kids are given a smaller driver to power the VAD that has a much longer battery life and is therefore more portable. Caleb was unable to join that trial.
"I think the momentum in this field is very real," he says. "And that, between advances in technology, stronger collaboration and a better understanding of which patients benefit most, the future for those kids who have heart failure and need VADs is really brighter than it's ever been."
Still, he says, he understands that from a parent's perspective, "you want these pumps and this technology to evolve as fast as it can, right? You want to have pumps that are fully implantable, that don't require an external battery or external power source, so that kids can live as normal a life as possible."
Since the stop-work order was announced, James Antaki has received dozens of calls and emails from families eagerly awaiting the PediaFlow device, and from parents whose children could have benefited from it in the past.
One of those notes came from Ned Place, a fellow professor at Cornell.
Place's daughter, Ingrid, died just one day after she was born with the same congenital heart defect — hypoplastic left heart syndrome — that Caleb has.
"Her heart was failing on Day 1," Place tells me, his voice cracking, describing those hours of panic and fear that happened more than 30 years ago.
"The PediaFlow would have bought my family more time," he says. "While it's too late to help Ingrid, I'm thinking about other families in the future."
For now, that future remains uncertain.
"I'm becoming increasingly demoralized, as you can imagine," says Antaki, "because I don't see any way out of this predicament unless this funding is unfrozen."
He has some hope that Cornell will reach a deal with the Trump administration to restore funding, as other elite colleges have done.
But the current reality is that for more than six months, his lab has been shut down, his grad students have left and his key technician on the project was laid off. He still hasn't found alternative funding.
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