Miracle Kids 2026: Luke Johnson

Dana Petrillo and Andrew Johnson knew their first child would need surgery immediately after birth. They knew that the major blood vessels leading to and from his heart were transposed, which would prevent his blood from carrying enough oxygen to his organs.

They braced for it.

But what they couldn’t anticipate or steel themselves for was the news they received some 10 days after Luke Johnson’s birth in January 2025. Their son had developed an infection called necrotizing enterocolitis. Not only would they have to delay his heart surgery, he needed an urgent operation to save his life.

“When that happened, I really was starting to get worried that we might go home without our baby,” Dana said.

She was speaking by phone from her home in Newark, with Luke babbling energetically in the background. Getting him to that point took the efforts of a multidisciplinary team at Golisano Children’s Hospital that responded to his complex conditions with both compassion and skill. In the process, they not only saved Luke but helped restore Dana’s faith in the health care system.

That’s how Dana tells it. The clinicians involved in Luke’s care acknowledge their lifesaving work, but they point to something else, too.

“You cannot keep Luke down,” said pediatric surgeon Derek Wakeman, MD. “It’s a story of resilience.”

The First Diagnosis

Dana and Andrew moved to Newark from Newburgh, NY, two years ago. Their excitement about welcoming Luke became tinged with worry after Dana’s 20-week ultrasound, which revealed the heart issue. Given the condition’s complexity, Dana’s care was quickly transferred to URMC.

“Luke’s condition is called transposition of the great arteries,” explained Joseph Kuebler, MD, medical director of URMC’s Pediatric Cardiac Care Center. “The aorta is attached to the heart’s right ventricle instead of the left, and the pulmonary artery is attached to the left ventricle. As a result, the two circulations do not mix properly, preventing enough oxygenated blood from reaching the rest of the body.”

The diagnosis jarred Dana. She’d seen her mother go through a series of surgeries downstate, and they had not always gone well. She found herself remembering that experience as she prepared for Luke’s birth.

“I was—I don’t want to say pessimistic—but it didn’t sound like something somebody would be able to survive,” she said. “I didn’t know they could do surgery like that on such a young baby.”

Immediately after Luke’s birth, however, the news seemed good. He’d arrived full-term, reducing the risk of complications. Doctors successfully performed a procedure called a balloon atrial septostomy, putting a hole between two chambers of his heart to improve the blood flow and stabilize his condition. But as the family and the care team prepared for the arterial switch operation, troubling signs appeared.

‘Effectively, the Entire Colon was Dead’

Luke’s labs suggested severe infection. His white cell and platelet counts dropped. Wakeman, called in to consult, was deeply concerned.

“There was air in the wall of his intestine and air in the portal venous system, the blood vessels that drain the intestines and end up in the liver,” he said. “When you can see air in that system, you can tell there’s a lot of infection present. He was a very sick baby. He needed a lot of medication to support his heart and maintain his blood pressure, which is a worrisome sign.”

The symptoms indicated necrotizing enterocolitis, a bacterial infection that’s sometimes a complication of Luke’s heart condition. Often, antibiotics cure it. Luke’s case seemed more serious, and Wakeman realized he needed immediate surgery.

What he saw in the operating room validated that decision.

“Effectively, his entire colon was dead, but it had not perforated, which it likely would have if we’d delayed,” Wakeman said.

The surgical team worked delicately. Luke’s tissue was fragile. Anesthesia was tricky. His liver was swollen. Dana and Andrew waited.

“I really appreciated the honesty of Dr. Wakeman and the rest of the doctors and nurses,” Dana said. “He warned me he might have to call me from the operating room with bad news. It was so scary.”

Wakeman ultimately had to remove most of Luke’s colon.

“With enterocolitis in general, it’s this balance between removing what has to go and not removing too much, allowing for later reconnection,” Wakeman said. “In Luke’s case, the news was actually good in terms of his long-term prognosis. His small intestine was relatively unaffected, which gave us a lot to work with later.”

Nonetheless, Luke came out of surgery looking rough. The surgical team used a temporary closure device for a planned second look, rather than sutures.

Andrew and Dana met many families during their stay and saw endings both happy and sad. They knew the range of possible outcomes.

“Oh my God, it’s burned into my memory,” Dana said. “He was very swollen, not only from the surgery but from the infection. And there were tubes everywhere. It was terrifying, and it reminded me of what my mom looked like before she passed away when I was a teenager.”

Two days later, on Jan. 24, doctors operated again, removing more tissue and creating an ostomy to allow waste to leave Luke’s body.

Back on Track

Luke was healthy enough to undergo the delayed arterial switch procedure on Feb. 18. George Alfieris, MD, led the surgical team.

“It’s a very complex procedure,” Kuebler explained. “Not only do you have to switch the aorta and the pulmonary artery, you have to move the coronary arteries, which in a baby of Luke’s age are perhaps 1 to 2 millimeters in diameter. It’s an incredible achievement that requires extraordinary surgical skill.”

The surgery succeeded, but doctors worried about the impact the delay might have on Luke’s recovery. Dana said they briefly considered putting Luke on ECMO (extracorporeal membrane oxygenation) because one side of his heart didn’t seem to be pumping well enough.

Then, wonderful things happened.

Luke rebounded. Within a week, his breathing tube was out.

“It was amazing to see how well he progressed throughout his stay,” said cardiac-care nurse Jaden Scott.  “His parents were very lovely and supportive. It was incredible to watch him go from so sick to smiling and doing ‘normal baby things.’”

Soon, Luke was able to go home. On June 10, he returned for another surgery with Wakeman, to close his ostomy and reconnect his small intestine to the remaining end of his colon.

“He overcame a lot,” Wakeman said. “Not only did he overcome a lot, but he ultimately did really well. Aside from his scars, you wouldn’t even know. He benefitted from outstanding interdisciplinary care with involvement from many services lines and a lot of doctors and nurses who did their best for him. But each of these procedures was serious on its own, and when you put them all together, his recovery is impressive.”

Today, Luke is meeting his milestones. He’s happy and interested in people. And Dana and Andrew are grateful to a care team that remains invested.

“He has had to a have a few other surgeries, including one to move his urethra, and Dr. Wakeman has often popped in to say hello,” Dana said. “I remember one appointment after he reconnected his colon, he got quite tearful [with tears of joy] thinking about how close Luke was to not making it.”