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A little boy who was expected to need a heart transplant received a much better gift instead: his own heart, repaired and now free of defects.
Maverick Waler, 5, of Redmond, Oregon, was born with more than a dozen holes in his heart, a condition known as “Swiss cheese” heart.
Most children born with Swiss cheese heart undergo several surgeries earlier in life and then typically receive heart transplants in their late teens to early 20s, according to New York-Presbyterian Hospital, where Maverick underwent surgery.
Little Maverick, on the other hand, was able to undergo a different kind of procedure.
In December 2021, doctors patched the holes in Maverick’s heart.
Now, Maverick isn’t expected to need any other procedures except for some regular tests.
“Now he has his new heart, or his ‘Iron Man heart,’ because he loves Iron Man,” Maverick’s dad, Brad Waler, told Originol Digital in an interview.
“He has a superhero heart and he has tons of strength,” he added.
Likely to need ‘immediate intervention’
Brad Waler and his wife Ellyn Waler learned of their son’s heart condition while Ellyn was still pregnant, the family shared with Originol Digital.
During a normal growth ultrasound at around 20 weeks, the technician saw something he didn’t like, Brad Waler said.
Ellyn Waler was referred to a pediatric cardiologist in Bend, Oregon, where doctors did another ultrasound. They noticed heart defects in the Walers’ unborn child.
“At that point, we no longer were going to have a ‘normal delivery,’” Brad Waler said. “[Maverick] would need to be born in Portland and he would likely need immediate intervention.”
Brad Waler said it was “heartbreaking” to know that his son – the couple’s first child – would be born with a serious medical issue.
“Everything is so new that you don’t really know how to process it any differently than what’s in front of you,” Brad Waler said.
Maverick was born on June 13, 2017. What had been a scheduled C-section for the Walers’ baby turned into an emergency C-section when Maverick’s heart rate dropped suddenly.
Once Maverick was delivered, Brad Waler said he got to spend a few precious moments with his son before he was taken to the NICU to recover for two weeks.
“Things got really tough really fast,” Brad Waler said. “He needed heart surgery and you couldn’t have that unless he was well enough for it.”
Maverick had his first heart surgery at just 2 weeks old. He spent two more weeks in the pediatric ICU recovering from the procedure.
When the Walers brought Maverick home after his procedure, they noticed that the incision on his chest looked red and infected, so after just 24 hours, they drove three hours back to Portland and spent another week and a half in the hospital, Brad Waler said.
“That was kind of a nightmare,” he added.
After his recovery, the Walers were finally able to bring Maverick home.
At the time, he had a nasogastric (NG) tube, through which the Walers fed Maverick and gave him his medications. They also had to administer blood thinner injections, Brad Waler said.
“He had a lot of medical needs, of course,” Brad Waler said. “But it was nice to finally get him home and finally do ‘normal baby’ things.”
“He continued to do really, really well. All his blood oxygen numbers were really good.”
Through all of Maverick’s health challenges, Brad Waler and his wife relied on the support of their family and each other, Brad Waler said.
“Our relationship is really strong and we’ve always been there for each other,” he said. “I think we make a really good team when we’re in a situation such as this. We’re both there for Maverick completely. And we do what needs to be done for him.”
Over the last four years, as Maverick has grown, the Walers have taken him for regular checkups with his cardiologist.
“Everyone kind of thought that he would need surgery again after a year, maybe two years,” Brad Waler said.
“But he continued to do really, really well. All his blood oxygen numbers were really good.”
Added Waler, “He was doing so well, there was no reason to do surgery. And they wanted him to be as old as possible before having another surgery.”
About a year ago, the Walers noticed that Maverick’s blood oxygen levels started to dip, which caused his lips and fingers to start to turn blue, Brad Waler said.
As a result, Maverick would experience nausea.
“It got to be a real interruption in his quality of life at that point,” Brad Waler said.
Dr. Bacha’s procedure would be able to close the holes in young Maverick’s heart.
Despite the difficulty of seeing their son struggle, Brad and Ellyn Waler were somewhat prepared because they knew he was going to need another heart surgery, the dad said.
What they didn’t expect is that the surgery would take them to New York City.
‘Really, really extreme’
Brad Waler said Maverick’s local cardiologist asked the Walers if he could send Maverick’s charts to Dr. Emile Bacha, director of congenital pediatric cardiac surgery at New York-Presbyterian Morgan Stanley Children’s Hospital.
The Walers agreed because, as Brad Waler said, “The more eyes on this, the better.”
Though Maverick was expected to undergo a Fontan procedure – and would eventually need more surgeries and a heart transplant – Bacha had developed a different kind of procedure.
Instead of making temporary fixes to Maverick’s heart, Bacha’s procedure would be able to close the holes in Maverick’s heart.
Closing the holes, rather than doing a Fontan procedure, is “always the best option because the end result is a normal heart,” Bacha told Originol Digital.
“Any time you have a chance to actually fix a heart in an anatomically correct way, that’s definitely the better way to go forward,” Bacha added.
Though Bacha has used his procedure in about 20 cases of children with Swiss cheese heart in his career, he said Maverick’s condition was one of the worst he had seen.
“The number of holes that he had was really, really extreme,” Bacha said. “Normally, you get maybe five, six, seven and then you try to close them all. But he had 12.”
Bacha said that despite the challenge, he believed he could close all the holes in Maverick’s heart.
In December 2021, the Walers traveled to New York City. Maverick underwent the procedure, done by Bacha and Dr. Christopher Petit, the chief of the pediatric cardiology service at New York-Presbyterian Morgan Stanley Children’s Hospital, on Dec. 13, 2021.
The surgery lasted more than six hours, Brad Waler said.
“It was definitely nerve-racking,” Brad Waler said. “But Dr. Bacha just kind of busted into the waiting area and he looked like he had a positive look on his face.”
Brad Waler said hearing from Bacha that he was able to patch all the holes in Maverick’s heart was “a huge relief.”
“It feels amazing, as a parent, to watch your kid thrive.”
“I felt like I wanted to like hug him or shake his hand, but… you’re in a hospital, there’s COVID protocols. So I resisted the urge to show my appreciation,” Brad Waler said, laughing.
Maverick isn’t expected to need any future heart surgeries, Bacha said.
‘Way more stamina’
Since the procedure, Maverick has been doing really well, Brad Waler said.
“It’s a huge change,” Brad Waler said. “He’s got way more stamina. He acts like a kid his age. Before, it was like, he’s a cardiac kid. He’s only going to have 50% to 70% of the energy another kid his age is going to have.”
“He would get tired. He’d want to stop and take breaks,” Brad Waler continued.
“And now he can run and go on and on and play at the water park and do whatever he wants to do.”
“It just feels amazing, as a parent, to watch your kid thrive,” added Brad Waler.