‘Your kid will smile again’: Iowa family spreads positivity after a 3-year-old's open-heart surgery

Imagine a 3-year-old boy waking up from a groggy sleep surrounded by tubes and wires like some sort of robot. He’s out of a successful surgery, but the road to recovery is just beginning.  

That’s the situation Chad and Amanda Zenisek of Fairfax, Iowa, found themselves in this past summer as their youngest son, Evan, recovered from open-heart surgery at University of Iowa Health Care Stead Family Children’s Hospital. 

“You’re being told that everything went well, but you still feel a long way from your normal,” Chad Zenisek says. 

Nearly six months after surgery, the family is back to the routine they had before Evan’s diagnosis of a serious heart condition. Still, as they reflect on the life-altering year for their family, they want Evan’s story to give hope to those families who may feel scared and alone in the wake of a serious diagnosis.  

The Zenisek family knew that Evan had a heart murmur when he was born, but they were told it was something he’d grow out of and his care team would monitor him in the meantime. His dad says, “There were no obvious symptoms at all.” 

“They tried to do a scan when he was 2 and it wasn't successful, and then they came back and did another scan,” Amanda Zenisek says. “It was at that point we said to ourselves, ‘Oh no, this is actually quite serious.’” 

Evan was diagnosed with partial anomalous pulmonary venous return (PAPVR), a rare, congenital heart defect where certain blood vessels are attached to the wrong part of the heart. The defect causes a variety of issues, including excess blood flow to one side of the heart.  

“It's a sinking feeling inside to hear your child has a heart defect,” Evan’s mom says. “And then when you start to think about the consequences of that defect, that feeling exacerbates.”  

As doctors put together a plan, the Zeniseks searched for information about their options and inspiring stories of other kids overcoming the defect. They found hope from a UI Health Care story featuring cardiothoracic surgeon, Yuki Nakamura, MD. 

“I found that story and it gave me a lot of confidence in Dr. Nakamura. I could barely believe that someone could do a whole heart transplant on an infant,” Chad Zenisek says. “If I remember right, it was 12 hours to perform that surgery. It was just amazing to me.” 

That sense of awe mixed with anxiety when Evan underwent a three-hour surgery where Nakamura essentially redirected connections in the boy’s heart, making sure the proper connections were made, and restoring normal blood pressure.  

Evan and his parents were in the hospital for just five days, but those days often feel much longer for children and their caregivers.  

“People tell you the recovery period is going to be really rough, but it is more difficult than you imagine,” says Amanda Zenisek, remembering how badly Evan wanted to pull out the tubes and wires that were helping him recover.  

The first three days were some of the hardest moments for the Zeniseks, desperately wanting their energetic, playful son to return. 

“It’s hard as a parent to sit there after surgery and your kid is not smiling. You know he’s in pain, he’s confused and disoriented,” Chad Zenisek says. “But then, that third day when we finally got him to play with some toys and laugh a little bit, we felt like were getting back to normal and making progress.” 

When asked what he would say to the next family watching their kid recover, the Zeniseks say to remember “the kid coming out of surgery will smile again.” 

The return of Evan’s smile and childlike joy serves as a reminder of how resilient the youngest patients can be with the backing of a world-class cardiothoracic care team.  

“I would tell parents to have confidence in the amazing staff at the children’s hospital,” Chad Zenisek says. “The surgery and post-op recovery period is very difficult, but this is something that could save your kid's life.” 

For Evan, catching the defect early was a blessing; if left untreated, the condition can cause serious health problems as children age. Thankfully, because of the care team at Stead Family Children’s Hospital, Evan’s future feels brighter. 

“He's back to the way he was without us worrying about if he's going to be okay in the future,” Amanda Zenisek says. “The fear that his heart isn't going to be okay is gone now, and that's something we have the hospital to thank for.”