IOWA CITY, Iowa — The moment nears. Will Kohn’s father leans over and asks: “Are you ready?” The boy nods, his gaze fixed on the scene 12 stories below. And then his eyes grow very wide.
Will is 6. This is his 295th day at the University of Iowa Stead Family Children’s Hospital – his 44th with a new heart. He’d been up here once before to see the fans at Kinnick Stadium wave in unison to him and the other young patients watching from the windows of the new hospital wing. This time, Will’s wave back to the crowd is bigger, more confident.
It’s a night game, so many in the crowd fire the flashes on their phone cameras: Tens of thousands points of light, aimed at the children who can’t be at the stadium.
Will hasn’t spoken in months, since he underwent a tracheotomy to help him breathe. He gets his parents’ attention by clicking his tongue, then communicates by mouthing sentences. Sometimes, a dad only needs to see his son’s eyes.
“They were huge when he saw all the lights from the cameras,” says Chris Kohn, his father. “This was his first night wave. I think it even caught him off guard.”
It’s that way for a lot of us, isn’t it? Since the Iowa wave began in September, a simple gesture has grown to mean so much.
For the fans looking up at the kids in the windows, perhaps it’s a taste of perspective. They’re attending a game. Many of the children waving back are in a fight for their lives. The message is something like: “We see you. We know you’re there. We know you’re going through a hard time. We support you.”
For the kids – and for their families – it’s something else, too, smaller and yet incredibly significant.
“A whole stadium turning and waving … it’s huge,” says Meghan Kohn, Will’s mother. “The kids just forget about their hospital life for just a few moments.”
For the children and families in the UI Stead Family Children's Hospital including 6-year-old Will Kohn, the end of the first quarter marks the beginning of their brief escape from the hospital walls. This is Wills story.
Although the public-address announcer at Kinnick Stadium announces the wave, it’s more an acknowledgment of the special moment about to happen. This new tradition wasn’t manufactured in the Iowa athletic department — not that there would’ve been anything wrong with that — but grew from Iowa fans.
“The coolest thing about it,” Iowa coach Kirk Ferentz says, “is that it’s such a grassroots thing. Someone had the idea and the thing just took off.”
In May, Krista Young, an Iowa fan from tiny Anita, in the state’s southwest corner, posted a message to the Facebook page Hawkeye Heaven:
“I think with the new U of I hospital addition open, Kinnick should hold a ‘wave to the kids’ minute during every game. Can you imagine how neat it would be to have all of those fans, players, & coaching staff looking up at you sending a little extra inspiration?”
“It just came to me, and I typed it out,” says Young, the mother of three boys and operator of a daycare. “And it just took fire.”
The site’s administrator promoted the idea, and by Sept. 2, when the Hawkeyes opened their season against Wyoming, there was a growing sense something would happen between the first and second quarters. High above the stadium on the hospital’s 12th floor, patients and their families gathered to watch the game. They had heard there might be something extra. Young was in the crowd below.
“I expected several little groups to do it,” Young says. “I knew it had gotten out there. I didn’t expect this.”
The crowd of 68,000-plus rose as one, looked to the hospital — at the patients and their families and the caregivers, too — and for a long, sustained moment, waved at them.
Inside the hospital, it made an impact. The architects designed the 12th floor, which features a wraparound view of Iowa City from the highest structure in the county, as a public space. But on game days, they wanted it to be for the kids and their families. A large room facing west is known as the Press Box Café. On autumn Saturdays, it’s set up like an indoor tailgate. A giant TV on one wall is synced with the video boards inside the stadium. Every inch of the field is visible from the windows.
“Just going out and feeling the sun and the rain, they miss that,” says Kristen Brown, a former Iowa softball player who’s a nurse practitioner in the Pediatric Intensive Care Unit. “They miss all of the experiences that other children and other people are getting to experience. Anytime we can make them feel normal and a part of something, it’s very meaningful.”
Iowa athletes from every sport have long been regulars at the hospital, which until February was contained in the adjacent University of Iowa Hospitals complex. “It really does promote healing,” says Gwen Senio, the hospital’s director of child life, of the athletes’ visits to patients – many of them Hawkeye fans. “And hope. It gives them hope. It gives them connection.”
College athletes visiting sick children is not unusual, but here the hospital is literally steps from the Iowa campus and from many of the athletic venues. Now, with the newly available prime seats to watch live football games, it's a big deal to the children.
“We’ve had kids that wanted to stay that extra day so they didn’t miss (watching) the game from the hospital,” Senio says, and she’s not joking.
The start of the Iowa fans waving created an even stronger connection. If no one knew what to expect that first time, certainly no one could have predicted the wave would go viral.
“I just thought it would be cool to acknowledge them up there,” Young says. “It’s turned into so much more.”
Meghan and Chris Kohn tried for years to have a child. It wasn’t until after they had stopped trying, in their late 30s, that they got unexpected news. But soon after that came unwelcome news.
Before Will was born, he was diagnosed with a significant heart abnormality: hypoplastic left heart syndrome, in which the left ventricle is severely underdeveloped. He underwent surgery shortly after birth, and then again in the ensuing months. The procedures are only stopgaps. In July 2014, at age 3½, Will was placed on the list for a heart transplant.
Even then, though small for his age, Will was a typical little guy, strong-willed but happy. He loves construction vehicles and Legos and he likes bugs a lot, too. He was a fixture at football games at Pleasant Valley High School in Bettendorf, Iowa, where Chris is the head freshman coach and has been a high school assistant for 18 years.
“When I get a new heart transplant,” he would tell his parents, “I’m gonna be big. … Can we go to the beach when I get my new heart transplant? Can we go to Legoland?”
By last fall, Will was in kindergarten. But his heart was failing, leaking proteins and fluids into his abdomen, causing it to swell. Last January, when he was admitted to the hospital, the family thought he might go home in a few days.
He’s still there.
In February, Will was the first patient to move into the new building. As they rolled down the halls of the adjacent older hospital, security personnel spoke into their mics: “Patient No. 1” had passed another checkpoint. But while the new building features a patient- and family-friendly design, there’s no replacing what is lost. Outside, life goes on. Inside, things settle into numbing, isolated routine.
“You miss the everyday life, the normalcy,” says Meghan, who has spent only two nights at home since Will was admitted; she sleeps on a pull-out bed in his room, a curtain drawn to create a semblance of privacy. “I like to just be here because then I don’t miss the other as much.”
Chris remained behind in Bettendorf, about an hour east on Interstate 80, teaching and coaching. He spends every weekend at the hospital — this is the first season since 1997 he hasn’t been coaching on Friday nights — and when possible, he visits during the week. Being apart, he says, has been the most difficult thing. The house feels empty.
“I didn’t really go in Will’s room at all until this week, unless I was vacuuming, because it wasn’t a happy place,” he says. “We’ve been split a long time.”
As the months wore on, Will’s health deteriorated. If he walked from the bed to the door and back, his pallor turned gray and he struggled to breathe. Then he was no longer strong enough to walk.
Last spring, doctors implanted a Berlin heart, an external artificial heart pump. In June, a heart was located, but it was unsuitable for Will.
It was almost lunchtime on Sept. 14. Chris was teaching sophomore biology when his iPhone rang. The standard ring tone is the Iowa fight song. This was “Kickstart My Heart,” by Motley Crue.
That meant Meghan was calling with news — though Chris couldn’t be sure if it was good or bad. Moments later, as he walked down the hall, people approached him with congratulations and well-wishes. He wondered how everyone knew they had found a match for his son, only to learn several students in that biology class had tweeted the news.
A few hours later, Will headed to surgery.
“We just kissed him goodbye,” Meghan says. “He waved. I told him, ‘You got this, buddy. This is what we’ve waited for.’”
Will just looked back at them and nodded. Eighteen hours later, he had a new heart — beat-beat, beat-beat, beat-beat — and a fighting chance.
But it’s a little more complicated. Will’s kidneys stopped working after the transplant. Although the Kohns hold out hope they’ll reawaken, they’re preparing for the likelihood Will will also need a kidney transplant. For now, he’s undergoing daily peritoneal dialysis. For 17 out of every 24 hours, he’s tethered to a machine that alternately pumps dialysis solution into his abdomen, then pulls waste out.
“He takes it like a champ,” his father says. “That’s the one thing that has gotten us through this. He doesn’t complain. He doesn’t cry. He finally, just a couple of weeks ago, cried about wanting to come home, which he’s never done before.”
Will turns 7 on Nov. 12. He’ll almost certainly celebrate in the hospital. The current goal – it’s been reset several times – is to be home for Christmas.
On Saturday afternoon, Chris puts up two signs in their third-floor window: a cartoon rendering of Will as a superhero and a simple message in block letters: GO HAWKS. Since a move down the hall a few weeks back, their room no longer has a direct view of the stadium. But the fans headed to the game could see the signs.
Chris and Meghan turn down an invitation to attend a tailgate with friends. Instead, they watch football games on two screens.
Will is anxious; he wants to get upstairs. To kill time, he and his parents take laps around the unit. As Chris pushes the wheelchair, Will listens to songs about trucks on an old iPhone.
It’s part of their daily routine, dozens and dozens of trips around the oval-shaped Pediatric ICU. Stop to look at the fish in the tank out front. Then another lap. Sometimes they take an excursion to the first floor, where Meghan can get a coffee and Will can get a closer look at ongoing hospital construction.
Kickoff nears and they’re ready. Attached to Will’s wheelchair: an oxygen tank and a portable monitor, which shows that new heart beating strong, his oxygen saturation stats hovering in the high 90s, excellent numbers. Accompanied by nurse Maggie Behounek, they head upstairs.
On game days, access is restricted to patients and their immediate family. But even so, the 12th floor is crowded. Kids arrive in wheelchairs and wagons, or walking with IV poles. Many wear black and yellow Iowa gear. Some wear masks to ward off germs — Will’s mask is red, with a message: “I got a new heart.” When the Kohns arrive, the spots by the windows are all taken. But in an act constantly repeated as new patients arrive, a family moves to make room.
Chris, who grew up an Iowa fan, watches the game intently. Will, listening to a song about firetrucks, spends more time watching the other kids. As the first quarter nears an end, more people begin crowding toward the windows.
“You want to wave a pompom?” Meghan asks, but Will shakes his head no. “Just your hand?”
“Yes,” he mouths.
Suddenly, thousands of cellphones light up. The wave begins. On the 12th floor of the children’s hospital, boys and girls and moms and dad wave back. It’s no longer new. It’s always touching.
“Look what Minnesota is doing,” Chris says, pointing to the Gophers players, who have moved from the visitors’ sidelines to near midfield, then turned together to wave. (Minnesota coach P.J. Fleck would later say he wanted to honor the kids in part because he lost an infant son to a congenital heart defect.)
Will takes it all in, and he waves — first with his right hand and then his left. Beneath that red mask, he smiles. Pinpricks of light seem to dance in his eyes.
“I don’t think you understand it until you see it in your kid’s eyes,” Chris says. “It’s pretty cool. And then you watch your child want to stay just for that. And then even if he gives just the littlest wave, it’s like, ‘OK!’”
When the wave ends, Chris and Meghan wheel Will to the elevator. By the time the second quarter begins they’re back in the Pediatric ICU. Nate Stanley’s third-down pass falls incomplete. With a 7-0 lead, Iowa punts.
Chris plucks Will from the wheelchair and plops him on the bed in Room 326. Chris and Meghan wash their hands, then put on masks. Behounek, the nurse, attaches the tubes to begin a 17-hour course of peritoneal dialysis.
Tomorrow is Day 296.
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