By Nick Lunemann
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MINNEAPOLIS, Minnesota (WCCO) — At 5 years old, William Staley Olesen is a ball of energy. He loves Nintendo, NASCAR, Minnesota sports and talking about becoming a firefighter someday. Watching him run around, laugh and play, it would be hard to know just how much he has already been through.
William received a heart transplant when he was 10 months old after doctors discovered, before he was born, that he had a rare condition called heterotaxy syndrome, which caused severe abnormalities in his heart and other organs.
His parents, Katie Staley and Betsy Olesen, said their journey began during a 20-week anatomy scan while they were living in Fargo.
“We were so ecstatic that we were having a little boy,” Olesen said. “And then just when our midwife came in, and you could tell something was up, and she just told us right away.”
Further testing in the Twin Cities confirmed William had heterotaxy syndrome, a condition that can cause organs in the chest and abdomen to form abnormally or be misplaced.
Staley said William’s condition was complex. In addition to problems with his heart, he was born with malrotation in his intestines, webbing in his intestines that required surgery when he was 7 days old, and a tethered spinal cord that later required surgery.
William was delivered at Abbott Northwestern Hospital and then transferred to Children’s Minnesota for specialized care.
Staley said one of the moments she remembers most from the day he was born came when she first saw him.
“What really I remember is the moment I got to see him, and they rolled me back into the room, and he just grabbed my finger, and he looked directly in my eyes, and he just, like, was completely calm,” she said.
Soon after William’s birth, doctors determined his heart defects were too severe to repair through a series of surgeries and that the best long-term option would be a transplant.
Holly Thompson, a nurse practitioner with the Heart Failure and Transplant Program at Children’s Minnesota, said William had complex congenital heart disease affecting the valves, chambers and major vessels of his heart.
“He was initially a patient with congenital heart defect, and was found to not be an optimal surgical candidate,” Thompson said. “We knew that his heart configuration would not last his lifetime, and eventually, some point, he would need a transplant.”
For William’s parents, the news came with both relief and heartbreak.
“It was like excitement at the idea of, we’re just gonna start fresh, if you will, and not have to have all the surgeries over his lifetime to correct things that were wrong with his heart,” Staley said. “But it was also absolutely terrifying at the thought of not only him receiving a new heart, the fact that that heart has to come from another child, which means there’s a family who has to have a loss.”
That tension is one transplant families often carry, Thompson said.
“They can be simultaneously happy that their child gets a second chance at life, while devastated for another family that they are having to make the ultimate decision,” she said.
April is Transplant Awareness Month, and Thompson said pediatric heart transplants remain rare. She said there are about 2,300 people in Minnesota waiting for organ transplants overall, including 23 children waiting for pediatric hearts.
“It’s an extremely rare event,” Thompson said. “And it’s very much considered a gift.”
William waited 305 days for that gift.
During that time, Staley and Olesen said they worked to make life in the hospital feel as normal as possible. They brought items from the nursery they had planned for him at home, filled his room with toys and celebrated every milestone they could.
“We had toys coming out of our ears, and every day was just a day of celebrating whatever new milestone he was going to hit that day,” Staley said.
They also took him on stroller walks and even let him play in a small blow up pool outside during the summer.
Then came the moment they had been waiting for.
Staley said they were outside with William, watching traffic, one of his favorite activities, when their nurse practitioner came running toward them.
“We just accepted the perfect heart for William,” Staley recalled being told.
The transplant surgery went smoothly, his parents said. Less than a day later, William was alert, extubated and looking for a toy to play with.
Today, Thompson sees him every three months at Children’s Minnesota, where he continues to be monitored by his transplant team. She said a transplant is not a cure and William will need lifelong follow-up care, but his progress is exactly what doctors hope for.
“William is exactly what we hope for when we pursue organ transplantation,” Thompson said. “He is happy. He is healthy.”
For William’s family, the joy of watching him grow is never separated from the reality of how he got here.
“When we are having a moment of excitement and a moment of William thriving, it’s because of a person, and that person has a name versus just a theory,” Staley said.
Now 5, William is thriving in ways his parents once only imagined. He is in pre-K, loves math, talks football and rarely slows down.
His parents said that is exactly how they want him to live.
“We live really big,” Staley said. “We try to give him as many experiences as he can have.”
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