Ashley and Tony DiLeo knew their child would be tough.
Before they knew about the obstacles he would face, before they even knew their baby’s gender, Roman was Roman and he was a fighter.
His name comes from four-time World Wrestling Entertainment (WWE) championship title holder Roman Reigns. Around 12 weeks into their pregnancy the couple was watching WWE and noticed the professional wrestler who has publicly shared his journey with leukemia.
“He was so stoic and powerful,” Ashley DiLeo said. “He didn’t say anything, but he had such a presence.”
That’s when they chose their baby name.
Diagnosis
It was at a routine ultrasound several weeks later, when the couple learned about the first obstacle their baby would face.
Roman was diagnosed in-utero with what David Peng, M.D., the director of pediatric heart failure and mechanical circulatory support at University of Michigan Health C.S. Mott Children’s Hospital, described as “the most extreme and severe case of newborn dilated cardiomyopathy” he’d ever seen.
The condition meant Roman’s abnormal heart was too weak, thin and stretched out to adequately pump blood throughout his body. Or, as Peng said, his heart was not “doing anything a heart should do.”
Doctors monitored Roman’s health during the pregnancy before an induction was scheduled at 38 weeks at U-M Health Von Voigtlander Women’s Hospital.
Ashley DiLeo described the drive to Ann Arbor on that June day in 2022 as “nerve wracking.”
“One, I don’t know what’s going to happen after he’s born and two, I’m about to have a baby and I don’t know what that’s going to be like either,” she said.
But after a labor and delivery without complications, she finally met her son.
The medical team put the brown eyed newborn on his mother’s chest for brief skin to skin contact before he was taken to another room for monitoring.
By the end of his first week of life, it became clear he would need extraordinary support to keep him alive. At that point, he was put on a Pedimag ventricular assist device (VAD) while waiting for a longer term support device, called a Berlin Heart, to arrive. At two weeks old, he received the Berlin Heart to help stabilize his circulation for the time being.
But his parents and medical team knew the only way to move forward was a heart transplant.
“The heart pump not only kept him alive but allowed him to grow and thrive as a baby, allowed him to meet developmental milestones and got him in the best shape possible for the heart transplant,” Peng said.
Roman DiLeo in the hospital with his mom, Ashley DiLeo, while Roman was being treated with the Berlin heart device. Credit: Michigan Medicine
The Berlin Heart certainly posed some challenges to the DiLeos who were eager to hold their baby.
“It was kind of intimidating seeing it at first,” Ashley DiLeo said. “This generator with some tubes is keeping your baby alive and you want to be careful.”
But with help from the nurses at Mott, they quickly learned to adjust to the device and get into a routine that allowed them to bond and connect with Roman.
Through it all, he has always been the most charming and charismatic little guy. He definitely has a personality big enough for the world of pro wrestling and I know he’d be one of the good guys! It has been such a joy to see him thrive.”
—David Peng M.D.
