Wyoming Boy Born Without Complete Heart Finally Home After Successful Transplant

One of the things Deanna Skillman loves about the Greybull community is how everyone comes together. She’s seen it over and over again, most recently when she and her son Ayden returned from Denver after a so-far-successful heart transplant for her son.

“Ayden’s on a once-a-week appointment right now,” Skillman told Cowboy State Daily. “So, we go up to Billings once a week right now, and then every fourth appointment, we go down to Denver so they can see him. They still have to have eyes on him.”

Doctors tell Skillman that Ayden, 18, is doing extremely well so far.

“He hasn’t had an ounce of rejection at all,” she said. “The doctors said they’ve never seen anything like it before.”

Transplanted hearts usually have quite a bit of stiffness for a while, Skillman has been told.

“The heart, when it gets taken out of the body, it’s like in rigor mortis,” she said. “It usually takes about six months for that stiffness to completely go away.”

That timeframe, based on his August surgery, would have been sometime in March, Skillman said. But Ayden’s heart has already limbered up.

It’s taking to its new home like happily ever after.

The Boy Without A Heart

Ayden has lived most of his life without a complete heart thanks to a rare congenital heart defect. His life has been touch and go for as long as he can remember.

Despite that, the teenager rarely lets anything get him down, and that’s one of the things people love about Ayden and his story.

“They don’t know what causes (these rare forms of congenital heart disease),” Skillman said. “But it’s like the leading cause of death in children across the world.”

When he was a newborn, Skillman didn’t realize there was anything wrong with her son at first. But it soon became clear.

“We couldn’t warm him up,” Skillman recalled.

When she would go to nurse him, her son would just fall asleep within seconds. 

“He was getting too worn out,” Skillman said.

She layered pajamas on Ayden, trying to warm him up, but nothing seemed to help.

One day, her sister took his temperature. He was an icy 88 degrees.

“We’re like, ‘That’s not normal,’” Skillman recalled. “So, we called the pediatrician, and she had us go back to the hospital.”

Ayden, it turned out had what’s called hypoplastic left heart syndrome, one of the rarest of congenital heart defects in children, affecting just two or three of every 10,000 live births worldwide.

Ayden hadn’t been warming up because his heart couldn’t adequately pump blood in his tiny body. That’s also why he kept falling asleep when he was trying to eat. He was fatigued from the lack of blood flow.

Ayden Finally Gets A Heart

Most babies with Ayden’s condition do not survive. The few who do require multiple surgeries to make it, and that was true in Ayden’s case.

Those surgeries are the reason why Ayden has some developmental disabilities. Surgeries then weren’t as advanced as they are today.

Despite the difficulties, though, Ayden is sociable and loves working at his family’s business, Bob’s Diner & Bakery. He gets to be creative in the kitchen, but he also shines in the dining room, where he knows just how to make people feel good — with spontaneous hugs and smiles. 

Earlier this year, though, things had taken a turn for the worse for Ayden, and the family wasn’t sure their son was going to survive. 

A circulation issue caused a life-threatening infection in his leg. 

It was a sign, Ayden’s doctors told Skillman, that Ayden really needed a heart, and needed it soon. The family was praying for a miracle, and just four days after Ayden went to Denver, they got it.

There was a heart that seemed like a perfect match for Ayden.

And so far, so good. Ayden’s not out of the woods just yet, but the limberness of the heart so soon is a very promising sign. 

The 18-year-old still needs multiple immunosuppressants, though, to ensure his body won’t reject his new heart. That means he can’t be in large crowds, and he needs to wear a mask if he’s around others.

“We have to be very careful about where we take ourselves, and what we’re bringing back to Ayden, and where Ayden goes,” Skillman said.

They’ve also had to make sure people in the community know Ayden can’t have the usual hugs right now from anyone outside the immediate family. It’s elbow bumps only for the foreseeable future.

Still, the town did show up for what was a small, but still epic, open house at the family’s diner to welcome Ayden back. 

“We kept it pretty small, and if anyone was sick, they couldn’t come,” Skillman said.

One Perfect Night — Legos And Movies

Skillman has gotten lots of texts now that Ayden’s home. 

“Everyone’s excited,” she said. “And when people see him, they’re just happy to see he’s back home. They’ve also noticed that his skin color is different. Everything about his physical outward being, they’re seeing a night-and-day difference.”

Ayden, too, is very excited to be back home with his brothers Dominic and Josiah.

“Being around his brothers was what he cared about most,” Skillman said. “And the city can get so claustrophobic. I mean, we were getting out every day, but because he has so many restrictions, we could only go out certain times of the day. You know, either Walmart was packed, or the movie theaters were packed, so you had to pick the right times of day to go out, when it wasn’t crowded and stuff.”

Then there wasn’t much to do but hurry up and wait for the next uncrowded time frame.

“Here, he feels like he has more freedom,” Skillman said. “He can walk back and forth between the deer. He can walk around the block without having to worry about being in crowds of people.”

Still, the Skillmans had a little surprise for Ayden when he got home. His very own bedroom. 

“He was sharing a room there for a while,” Skillman said. 

But with it being flu and cold season, the Skillmans wanted Ayden to have his own safe space to retreat to, in case someone in the family did get sick. Which was wise, because a few days after Ayden came home, one of the boys came down with the flu.

“He was really happy to have his own space,” Skillman said. “That’s one of the first things he did was put all of his Legos into his room and hang up all of his posters.”

That included a huge welcome home banner Barbara Ann Green with the Basin Chamber gave Ayden. And a broken jousting stick from a renaissance fair in Red Lodge, Montana that Ayden had to miss. The staff had signatures from many of his Dungeons and Dragons pals, all wishing him a safe journey to get his new heart. 

After that, there were movies with his brothers — pretty close to a perfect night, if you ask Ayden.

Focus On Family

The Skillmans will keep it traditional for Thanksgiving this year. Some years, they’ve done an Italian theme, but they want to keep it simple. 

They don’t want to stress Ayden out. At the same time, keeping it simple puts the focus on what the family finds really important right now — and that’s just being together. 

“So, we’re just going to hang out at home this year,” Skillman said.

The family has already gone out and cut down a real Christmas tree for this year. They’ll decorate it for Thanksgiving, just as they do every year.

“We don’t have a theme,” Skillman said. “But every year we’ll each pick out a Christmas ornament of our own.”

Ayden, typically, picks out something with a Star Wars theme, though last year, he took a shine to a Hulk ornament instead.

Ornament shopping might have to be a little bit different this year, given that Ayden must avoid large crowds. No Black Friday shopping for Ayden and his new heart yet.

“The main thing is, Ayden gets to be home for the holidays,” Skillman said. “And he’s so happy about that. We all are. Because, honestly, we were making plans to have Thanksgiving and Christmas in Denver, if the doctor in Billings couldn’t do the ultrasounds and stuff.”

Contact Renee Jean at renee@cowboystatedaily.com

Renée Jean can be reached at renee@cowboystatedaily.com.