Small kid, big heart --- DL boy wears 'red cap' for '08 Heart Walk
Since almost the moment he was born, Duston Steeke had difficulty breathing.
"He was on oxygen from the time he was born," his mom, Amy, said.
Since that time, Duston, now 3, has had surgery on his heart and been sick multiple times, but looking at him, no one would ever know that. He's an average 3-year-old -- full of energy, loves the water and camping and loves to ride his mini 4-wheeler.
"He's a normal boy until he takes his shirt off," Amy said of her son's scars.
Ready to tell the story of their son, Amy and John Steeke, Detroit Lakes, are showing their appreciation for the American Heart Association. Duston has been chosen as the Red Cap spokesperson for this year's Heart Walk, scheduled for May 8.
John works for BTD, and the company matches dollar for dollar funds donated from employees. He has been giving to the AHA for years, but he never knew he'd be grateful for the organization like he is now.
"Research is what has saved Duston's life," Amy said. That research is from funds raised through the AHA.
Before Duston was born, Amy had had a difficult last half of her pregnancy. She also had difficult pregnancies with her two daughters, but they were fine after they were born.
Because of the difficulties, she had multiple ultrasounds while pregnant. Duston was born four weeks early and was put on oxygen immediately. What the ultrasounds didn't show was that the inside of Duston's heart was where the issue lay.
"The structure of his heart was fine, it was internal," Amy said.
He needed surgery on the unicuspid valve on his heart. Most people have a tricuspid valve.
Born in Detroit Lakes, after a team from Fargo was able to stabilize Duston and discharge Amy, the family headed to Fargo.
"They intubated him in Fargo and that's when we found out (about his heart problems)," she said.
The next morning Duston was transferred to Fairview Hospital at the University of Minnesota.
Not sure of their baby's future, they were encouraged to hold a small baptism before they left for the Cities. To add to the emotional rollercoaster, John said as they were preparing to leave the Fargo hospital, a doctor told them their baby was a "ticking time bomb" -- an inappropriate phrase he'll never forget.
Thankfully, when they got to Fairview, they were assured that, although serious, Duston's case was one of many.
"They were absolutely wonderful," he said. "They knew exactly what was wrong."
On Dec. 1, at 5 days old and 5 pounds, Duston went in for open-heart surgery. His heart was the size of a walnut.
After a successful surgery, Duston's chest was left open for three days because the swelling from the surgery would be too intense for his small chest.
But it wasn't over for the Steeke family.
After surgery, he was back in his room, and Amy, who was studying to be a nurse at the time, noticed something was wrong, according to the machines he was attached to. She was right; Duston coded.
After stabilizing Duston, the doctors told John and Amy that they had done all they could do and it was up to Duston to pull through. They hooked him up to a heart/lung bypass machine to give his heart time to rest. They started at 20 percent of Duston's heart doing the work and 80 percent of the machine doing the work.
At the time, Duston was on 20-plus medications, and doctors said he'd likely be on bypass for 11 days. With each day on bypass, there was a risk of more complications. Amazingly enough, though, Duston was off bypass three days later.
"He just kept surpassing everything else," Amy said.
The Steekes were in the Twin Cities for 32 days. They were able to come home right before New Years to a home they had only lived in for about a month before Duston's birth.
While in the Cities, the Steekes found a home away from home at a Ronald McDonald House about two blocks from the hospital.
"I would say we were the luckiest family there. Some were there for a year," John said.
They spent Christmas at the Ronald McDonald House. It was the first time Amy's daughters, Andrea, now 13, and Kacee, 10, were able to come see them. Amy said it was nice to be able to spend the holiday together as a family.
Once home, Duston received care from a home health nurse three days a week, had to visit the doctor in Fargo once a month and a doctor in Detroit Lakes once a week. After about six weeks, that routine tapered off, and now Duston only has yearly check-ups. He's also off all medications.
At 9 months old, he had another procedure done, but this time it was much less invasive and time consuming. He was only in the hospital overnight for a heart cath procedure.
"They went in through his leg, to his heart, rather than open him up again," John described. The procedure was to help Duston's blood flow easier.
Since then, doctors have told the Steekes repeatedly to treat Duston as any other 3-year-old. He won't be able to play contact sports like football or hockey, but they are learning there are other interests out there. Growing up in a sports-minded family, John said it was hard at first to think of his son not being able to participate in those sports, but he's more than happy to get Duston involved with golf, hunting and swimming instead.
And although they are to treat him like any other active child, the Steekes know their son's limits as well. John said the other day when Duston was jumping on the trampoline, he had to have his son get down and take a breather because he was breathing too heavily.
Duston also can't climb too many stairs or hike too far at once.
"It's hard to decide what to let him do or not," Amy said.
She said that Duston has been sick repeatedly this winter, and that's when she sees he's not a normal kid.
"I have to think day to day that he's a normal kid. Then he gets sick and I realize he's not normal. You feel pretty powerless," she said.
Doctors have told them as long as Duston looks and acts fine, he's fine. If he turns blue, sleeps a lot or acts sluggish, it's time to bring him back to the hospital.
He'll likely need more surgery in the future, but when that will be no one knows. Doctors repaired rather than replaced Duston's heart valve, so it will likely need replacing in time.
The family has a photo album of pictures filled with Duston's first few weeks, and John and Amy don't hide what happened to him. But although Duston looks through the pictures, he doesn't connect the scars on his stomach and chest with the baby in the pictures with his chest open. Amy said hopefully he won't be too self-conscious of them when he gets older.
Last year when the Steekes showed up at the AHA Heart Walk, they volunteered, saying, "If you need someone, we're here," John said. Organizers took them up on the offer, giving the title of Red Cap spokesperson to Duston, and involving John and Amy even more.
John said his drive to participate in the upcoming Heart Walk is because his son will need more surgery in the future and maybe with fund-raisers like this, the technology will be improved and less stressful for Duston.
The American Heart Association Heart Walk in Detroit Lakes is Thursday, May 8, beginning with registration at 4:30 p.m., followed by the walk at 5:30.
The walk starts and ends at the Pavilion, and there will be a variety of booths, complementary food and beverages and other activities there as well.
For more information, visit http://heartwalk.kintera.org/lakesarea, or call Liz Huesman at 701-306-8310.