Three heart surgeries before he turns 3, this Kansas boy is ‘still singing’

Monday wasn’t the best of days for little Winston Wahlgren.

Three days earlier he had open-heart surgery at Children’s Mercy — his third heart surgery since he was born.

Winston is just 2 1/2 years old.

So by Monday he was understandably a little cranky. All those people coming in and out of his hospital room. All those needle pokes. All those tubes stuck in his little body.

“He just was not in a good mood,” said his mom, Emily Wahlgren, 32.

So she started singing to soothe her little boy. He loves music. Church hymns. Lullabies. Thomas the Tank’s song.

And then, through his pain, with oxygen flowing through a nasal cannula, Winston started singing to his mommy.

“You are my sunshine, my only sunshine.”

Emily, who was making a cell phone video to share with grandpa and grandma, began to cry.

“I’d had a rough day, too,” she said. “It’s hard to see your baby stuck over and over. And he just sang the whole song by himself. He’s never done that before.”

She posted the video to the Facebook page she shares with her husband, Chad, 38, a teacher at the high school in Buhler, Kan., where they live.

“We have always sung to him,” said Chad. “We had a little Bluetooth speaker in (pediatric intensive care) when he was first born. We would leave music running all the time. He’s always enjoyed music.”

Children’s Mercy also posted the video on its Facebook page and Instagram account. It’s been viewed more than 5,000 times.

“Through all the numerous needle pokes and prods he is still singing! Melts our hearts and makes us smile,” Emily, a dental hygienist, told hospital officials.

Children’s Mercy has cared for Winston since before he was even born.

The first-time parents learned there was a problem with their baby when Emily had a sonogram 19 weeks into her pregnancy. Referred to Children’s Mercy, doctors told the Wahlgrens that their baby had a heart defect.

Winston was born with a relatively rare and often fatal congenital heart condition called HLHS — hypoplastic left heart syndrome.

According to Children’s Mercy officials, 1 in 100 to about 1 in 125 babies are born every year with a heart disease. Out of those about one percent are, like Winston, born with half a heart.

In the back of their minds, his parents worried that one day they would have to plan a funeral for their baby.

Winston had the first of three scheduled surgeries to reroute the circulation of blood through his heart — said to be the most high-risk performed at Children’s Mercy’s Ward Family Heart Center — when he was just six days old.

He was six months old when he had his second operation.

About 25 percent of babies die between the first and second surgeries, and the Wahlgrens came close to losing Winston then, too.

They credit an app designed by the hospital with saving his life.

A few months after Winston’s first surgery Children’s Mercy sent them home with a single-purpose Microsoft Surface tablet loaded with software called CHAMP; Cardiac High-Acuity Monitoring Program.

It allowed the Wahlgrens to share Winston’s daily vitals — his weight, what he ate, his diaper situations — and daily videos with a team at Children’s Mercy.

One of those videos revealed that Winston was not gaining weight, he was breathing harder, and he just didn’t seem his usual, happy self. Doctors told the Wahlgrens to get him to Kansas City, quickly, where they did emergency work on his aorta and sent him home the next day.

“One of the things that saved Winston’s life was the 15-second video,” Emily says on a video the hospital uses to explain the CHAMP program, which it is now sharing with children’s hospitals across the country.

Friday’s surgery was Winston’s final scheduled operation. His parents hope he gets to go home within the next week or so to their tight-knit Reno County community of about 1,300 people, where they were welcomed home after Winston’s first surgery with a huge banner hanging on their house.

Wednesday brought another day of pain and fussiness for Winston, who still had tubes stuck in him. But that all seemed to be forgotten when he got a visit from one of his favorite people — the hospital’s music therapist.

Emily said she wanted to share the video of Winston singing “to show people who love us and who have been praying for us how he’s doing and that he’s a fighter.

“He’s always been this happy little guy. He’ll be in a lot of pain and he says, ‘I’m OK, I’m OK.’ And he’ll fight through it. That’s his attitude in a nutshell.”

This story was originally published September 15, 2016 at 7:15 AM with the headline "Three heart surgeries before he turns 3, this Kansas boy is ‘still singing’."