On the evening of Saturday, May 30, Les and Jims Lincoln Lanes will host the ‘Strong Will’ Benefit for young William Sturzenegger, and his parents John and Heidi Sturzenegger of rural Merrill.
At first glance, five-month-old William Sturzenegger appears just as any other happy, healthy infant would at his age. John and Heidi agree, once upon a time William’s life and that of the Sturzenegger family was perfectly normal.
“He was born on December third of last year. Everything was great! He was a healthy baby weighing 8 pounds, 1 ounce. His birth went perfectly normal,” Heidi Sturzenegger explains. “Through the first month of his life he was like any other normal happy baby.”
But on the day of William’s first-month check-up, that all changed.
“His pediatrician discovered a heart murmur,” John says. “She said it can be common for babies to have them, but William’s was a little bit more pronounced.”
Concerned, William’s physician recommended the Sturzeneggers consult with Dr. Luke Lamers, a Pediatric Cardiologist at the University of Wisconsin Hospital and Clinics in Madison.
Following an examination of William two weeks later, Lamers gave a preliminary diagnosis of Mitral Valve Stenosis. The Sturzenegger’s were then advised of the possibility of William needing surgery within the next 2-3 years.
But, following an echocardiogram at American Family Children’s Hospital, the Sturzeneggers were informed William’s surgery timeline had now changed.
“After his first examination of William, the doctor estimated surgery would be necessary in 2-3 years,” John says. “Then after the echo, he said it may be more like 2-3 months.”
Within a week later, what was initially thought be a minor problem with Will’s breathing became the trigger for a whirlwind of events which would span five weeks. A call from Dr. Lamers had the family making immediate plans for a trip to Madison.
“Wow….it was a blur, I’ll tell ya that,” John says.
The couple arrived back at the hospital early Monday morning and William immediately underwent further testing.
“That morning they told the 2-3 month thing was out the window for surgery,” Heidi says. “They said it would be more like 2-3 days. We had so much information coming at us, things were changing all the time. But we didn’t care. All that mattered was getting our baby the care he needed.”
William received his first surgery date of Feb. 11. But that would soon change as well.
Once again, the couple jumped into the cockpit and put everything else in their lives on auto pilot.
“We spent all Tuesday night and Wednesday making arrangements back at home,” Heidi says. “At 7 p.m. on Wednesday evening, we were aboard an Aerocare flight out of Madison and headed for Boston.”
“They wanted to try a heart catheter procedure first to try to open the valve,” John adds. “The procedure was conducted on Friday the 13th and another echo. But when they finished, it looked like nothing had changed,”
The cardiac team performed another Echocardiogram on William on the day before his surgery, and his parents were quickly notified the surgery had been cancelled.
“They had us fill out his surgery paperwork while they did the echo,” Heidi adds. “We had just finished signing everything when William’s cardiologist came in and said the cath procedure had done its job.”
However within just a matter of a couple of days, it became clear young William’s fight was not quite over.
“He wasn’t eating well and breathing was getting funny,” John says. “We just knew it was time.”
William was re-admitted to Boston Children’s Hospital on Feb. 27. When the day finally arrived, William spent nearly seven hours in the operating room. The surgical team intended to repair William’s mitral valve as originally planned, but soon learned that was not an option. The focus then shifted to placing the “melody” valve.
Both Heidi and John state they were more relieved during the precision operation, than anything.
“I was relieved more than worried,” Heidi says with a grin.
“I was happy it was finally being done.” John adds.
After a brief 3-day stay, William and his parents were discharged from ICU and were discharged from the hospital a week late, on March 13.
William’s last appointment in Boston was on March 16.
“The doctors were very happy,” Heidi adds. “Everything was looking great and they felt comfortable with us going home. Everything has been great since.”
In looking back on the five-week ordeal, the couple is very thankful for the consistent support of family and friends both while at home and in Massachusetts.
“I think there was only two days of the entire time, when we didn’t have at least one family member or friend there to support us,” John says. “We cannot imagine going through this without them.”
The ordeal did not come without its costs for the family.
“My employer has been very understanding, which we are very grateful for,” John adds. John returned to work on March 18, however he was unable to be paid during his absence.
In addition to lost wages, the family now faces rebounding from out of pocket medical costs, insurance deductibles along with maintaining everyday household expenses.
Heidi and John are reluctant to admit the financial impact of their dauntless campaign to help their youngest son.
“At this point I’m just so happy he’s ok,” Heidi says. “Yes, there was a financial impact, but to us that doesn’t matter. What matters is our baby is home!”
As for William, the Sturzenegger’s proudly admit he maintained his smile and playfulness through his entire journey.
“No matter where he was, he was always so happy and smiling,” Heidi says. “All of his doctors were so amazed by how healthy and active he was through everything.”
As for the future, John and Heidi have been told William’s melody valve will be good for 3-5 years.
However, being the valve is so new to medical science, the evolution of medical technology will play a major factor in William’s future.
The one static factor the Sturzeneggers are aware of is that of William’s condition will be lifelong.
“He will never outgrow it. Throughout his life, he will need the valve replaced,” John says.
In addition, all future procedures with William’s melody valve must be performed in Boston.
“Strong Will’s” benefit will run from 6-10 p.m. on May 30 in an effort to help the Sturzenegger family with expenses accrued during their five-week plight.
Along with hot turkey and ham sandwiches, potato salad, baked beans and cupcakes, guests will be treated to a live performance from Sturzenegger family friend and musician Carl Jackson, along with several raffle prizes.
When initially asked about the benefit, Heidi and John were at a loss for words.
“I just don’t know what to say…” John said. “We have gone to benefits in the past to help others. But at those times you wonder, but can’t imagine being in their shoes.”
“Now we are in their shoes….” John adds as his voice wavers a bit. “I am…..we … are so blown away and grateful for the community…for doing this for us. It’s so amazing and shocking to have so much support. It’s hard to put into words.”