Super heroes in the movies wear costumes with capes, fighting off bad guys to save the world.
In real life, super heroes are people who go through extraordinary obstacles and win monumental battles with courage and resilience. Hutchinson has Iron Sam Schumann.
Like most comic book super heroes, Iron Sam has a back story.
Stacy Schumann and her husband Mark, Sam’s parents, were thrilled with her pregnancy of their first child. The couple had no concerns with their routine doctor’s appointment at 20 weeks until the ultrasound.
“They discovered a congenital heart defect,” Stacy said.
Stacy was sent directly to the perinatal physicians group at Children’s Hospital in Minneapolis for a level two ultrasound where a pediatric cardiologist interpreted the results.
“She diagnosed our baby with hypoplastic left heart syndrome,” she said. “This is where the left side of the heart is weaker than the right. It meant my delivery was going to have to be done at The Mother Baby Center at Abbott Northwestern Hospital in Minneapolis.”
Normally, when a baby is delivered, parents revel in holding and meeting their newborn child. This wasn’t the case for the Schumanns.
When Sam was born, he was taken from the delivery room to the neonatal intensive care unit at Children’s with the pediatric cardiology team looking at him to determine when he should receive heart surgery. At three days old, Sam had his first surgery to stabilize the heart. Doctors performed the Norwood procedure, taking the bottom part of the pulmonary artery, which normally goes from the right ventricle to the lungs, and joining it to the aorta, making it larger. The blood was now pumped from the right ventricle to the body. A shunt — the path — was created to get the blood to the lungs. An extra blood vessel found in babies before and after birth — was closed off to prevent extra blood to flow into Sam’s lungs.
After two weeks, the Schumanns took their new baby home. They knew that Sam wasn’t out of the woods, yet. The doctors said he would need two more surgeries.
At five months, infant Sam went back to Children’s for his second surgery. This one was the Glenn procedure, in which the surgeon disconnects another major vein from the heart (inferior vena cava) and connects it to the pulmonary artery. This was to improve how the blood flowed through the heart that had a small left (or right) side. It prepared the heart and lungs for the next — and supposedly final — procedure.
“The day after Sam had the surgery, his upper extremities started turning purple,” Stacy said. “He was building up pressure in his upper body. The next day, Sam went back into surgery to fix what was going on.”
When Sam was 2 years old, physicians found his tricuspid valve leaking, requiring another open heart surgery to repair it.
Sam’s life settled down for a little while. He and his family welcomed a new baby girl — Maya — into their family.
The supposed final surgery took place when Sam was 4.
“This surgery takes the blood to the lungs, allowing the blood to get oxygenated,” Mark Schumann said. “The blood then goes to the heart to be pumped through the body.
“In a normal heart, the left side pumps blood through the body,” he added. “The right side pumps it to the lungs to get oxygen. In Sam’s case, the surgeon made the right side do what the left side did. The blood passively went through the lungs to get oxygen.”
Sam lived a normal life this way for about six years.
The family regularly rode bicycles around Hutchinson. In the fall of 2020, when Sam was 10, he found riding bike difficult, needing to stop and rest or go back home.
“He told me his heart felt funny,” Stacy said.
His parents took Sam’s description seriously and back to Children’s he went for tests. The results were not good. Sam was put on the recipient list for a new heart May 26, 2021.
“We knew it would be a while for him to get ‘the call,’” his mother said. “It’s a slim chance if you aren’t in the hospital.”
Meanwhile, Sam taking Milrinone, a drug that stabilized his heart, stopping the progressive failure.
“Without it, Sam wouldn’t have lived much longer,” his mother said.
Sam carried a backpack with a pump for the drug in it everywhere.
“He couldn’t take baths,” his mother said. “He could only take quick showers.”
Sam named his backpack “Jeffrey,” decorating it with stickers and patches he received from Hutchinson first responders and Hutchinson High School athletes. It went everywhere with him, his lifeline for two years.
But earlier this year, Sam started getting sicker. He had low energy only wanting to lay around. On April 7, he entered Children’s because his protein losing entropathy couldn’t be managed at home anymore.
His wait for a new heart continued at the hospital. Friends and family visited him regularly. Sam did schoolwork online. He played games like bingo and participated in other activities at the hospital. His favorite was when the puppies came to visit.
Tara Tepley, owner of the The Paint Factory in downtown Hutchinson, arranged a special painting session at the hospital for the family.
Sam’s uncle created T-shirts with an “Iron Sam” logo, which were distributed around the community.
“We were looking for a way to energize Sam through this waiting period,” Stacy said of the “Iron Sam” moniker.
“I like super hereos,” Sam chimed in.
“We experimented with different characters with phrases, and ‘Iron Sam’ was created,” Stacy finished.
Sam’s time at the hospital was a challenge for him and the family. Stacy, a preschool teacher at Christ the King Church, received extended paid time off. Mark, a technical specialist for the New Ulm school district, on the other hand, had to use unpaid time off.
“During the summer, the (district’s) Chromebooks had to be fixed, or an order of 1,200 new ones were coming in. There was no one else who could manage it all,” Mark said.
“We were juggling schedules and times to be at the hospital,” Stacy said. “We’d check in with each other to see who was going to the Cities while we made sure someone was here at home.”
“My parents were great,” Mark said. “They live nearby and would come over to stay with Maya while I was at work and Stacy was at the hospital.”
The Schumanns call Sam and Maya “super siblings” as they dealt with the health challenges and missing their parents’ attention.
“It was hard,” said Maya, now 9. “It started when he had Jeffrey (the backpack). He got so much more attention than me.
“I really missed him when he went to the hospital,” she said. “I didn’t get to see him a lot and that really made me sad.”
The Schumanns said their time as husband and wife was put on hold, also.
“We were in business mode for 2 ½ years,” Stacy said. “We knew some couples who didn’t stay together through their child’s heart ordeal.
“When we got married, our pastor at the time said, ‘Be good to each other — and be good for each other,’ “ she said. “We reminded each other this phrase periodically through this time. We made sure we were a strong team.”
Finally, “the call” came on Sunday, June 11. A heart was finally available for Sam.
“It was late at night,” Stacy recalled. “We went upstairs and woke Maya up, telling her the good news — we’re going to go to the hospital to tell Sam in person the good news.”
When the family entered his room, Sam and his grandpa were sleeping. Sam woke up and saw his Mom’s bag. He knew something important was going on.
“I was really happy they found a heart for me,” Sam said.
While everyone was excited and getting ready for the big day, the parents had to deal with the medical insurance company.
“They wanted Sam to go to Mayo (in Rochester), as Children’s is relatively new with pediatric heart transplants,” Stacy explained. “Sam was their 14th. We remained steadfast that it was going to be done at Children’s, because we read that children who had the transplant where they’ve been receiving care since birth have better outcomes.”
Three days later, Sam had open heart surgery at Children’s. The surgery involved putting the new heart near the lung, squishing it to be by the lower left lobe for more compression. It is hoped that the lung and heart function will improve as he grows.
“I was scared when he was in surgery,” Maya remembered. “I was so happy to see him when he woke up!”
Sam doesn’t think much has changed with his new heart.
“When I woke up, I didn’t feel any different.” Sam said.
His mother disagreed, saying, “I noticed his level of energy was way different.”
Sam hasn’t overcome all the odds, yet. His body is rejecting the heart. He has had injections to help stave this off. He will be monitored with this issue for the rest of his life.
After 109 days in the hospital, Sam, now 12, was finally allowed to go home at the end of July. His life has become more normal again.
“I can’t wait to go back to school,” he enthusiastically said.
The family is thankful for the community support they received through all of this.
“We are overwhelmed,” Stacy said. “How do you thank everyone? There were friends, churches, teachers, the Hutchinson community and businesses. People from Washington, D.C., (and) California put Sam on their prayer list! It’s been so amazing!”
On a somber note, there is something the family realized when they got the news of Sam’s heart — someone else lost a loved one.
“Everyone is encouraging people to become a donor,” Mark said. “Yes, you have that designated on your driver’s license, but that isn’t something that is known with everyone in your family. You need to have that conversation — before the tragedy….especially, as a couple with children.
“It’s because a family did that, that Sam has a new heart,” he said.
