Just call him the kid with a heart.
Ayden Skillman of Greybull has lived a lot of his life without a complete heart because of a rare congenital heart defect. But thanks to a recent heart transplant, Ayden is now on a journey that his family and friends hope will change hislife.
“He did his first walk on the unit today,” his mom Deanna Skillman told Cowboy State Daily on Tuesday. “He’s on three different immune suppressant medications to suppress his immune system so it doesn’t attack the heart, and then we’re just slowly moving around.”
Ayden has had a tough yellow brick road to follow from the first day of his life, but the 18-year-old never seems to let anything get him down. That’s one of the things people love about Ayden and his story.
“He had one of the rare forms of CHDs, congenital heart defects,” Deanna said. “They don’t know what causes it, but it’s like the leading cause of death in children across the world, and it just keeps increasing every year.”
At first, Ayden’s parents didn’t notice anything unusual with their newborn son. By the second day home, though, it was clear something was drastically wrong.
“We couldn’t figure out why we couldn’t warm him up,” Deanna said. “When I would go to nurse him, he would just fall asleep within seconds because he was getting too worn out.”
Deanna layered baby pajamas on her son, trying to help warm him up.
“My sister-in-law took his temperature, and he was 88 degrees,” Deanna said. “We’re like, ‘That’s not normal,’ so we called the pediatrician, and she had us go back to the hospital.”
A diagnosis wasn’t long in coming.
Ayden had a condition called hypoplastic left heart syndrome, one of the rarest of congenital heart defects in children affecting two to three of every 10,000 live births worldwide.
With this condition, the left side of a baby’s heart fails to develop properly during pregnancy. That results in a chamber that’s too small to pump much blood to the body. That’s why her son had been unable to nurse and seemed so cold all the time.
Not many babies survive this condition. Those who do need surgery to survive. Lots of it.
Life’s About What You Can Do, Not What You Can’t
Today, Ayden is barely 18 years old, but he’s already become well-known in Greybull, where he works at Bob’s Diner & Bakery.
Ayden does have some developmental disabilities, caused by surgeries at such a young age when technology wasn’t as advanced as it is today.
“He doesn’t read or write really well, but he understands the tickets when they come in,” Deanna said. “And he’s very sociable, too, and so his overall personality, people just love him. He’s a very sweet-natured young man, and if you just talk to him, on average you wouldn’t know there’s anything wrong.”
Opening a diner was one of the things the family decided to do because Ayden loved to cook.
“It was already a dream of ours so we thought, ‘If we do this it gives him a skill for the rest of his life that he can do,’” Deanna said.
Friends and family describe Ayden as a laugh-with-you kind of guy, someone who makes people around him feel good. Like the time just last week when he spontaneously gave a woman a hug at the restaurant just because.
“It made her cry, and she’s like, ‘Oh, everybody needs to have a hug by him,’” Deanna said. “So, it’s just things like that, and his smile. Everyone always compliments his smile, that’s what people really love about him.”
Ayden’s parents have always encouraged him to focus on what he can do rather than what he can’t. That’s let his creativity shine through in areas besides food.
“He and his brothers are doing a Dungeons and Dragons campaign,” Deanna said. “It’s a Western campaign, and they have got quite the story going right now. His older brother helped him write it down, but a lot of the ideas were Ayden’s.”
Ayden then used Legos to build structures for the storyline, as well as little miniature characters to populate the fantasy world.
“My character is a rhinoceros-humanoid type thing,” Deanna said. “And in the first campaign, we were all suspicious to the sheriff, so we got sent to the jailhouse. It was kind of like a ‘Silverado’ movie campaign, where the bad sheriff doesn’t like you because you’re a good person.”
A series of photos showing Ayden Skillman's journey to get a new hart. At left, the day he foundout a heart was available. Right, the day he was admitted, July 22, to start on medication. Scroll to see the series. (Courtesy Deanna Skillman) 
Ayden Skillman is prepared for his heart transplant operation, and visits with his brothers in pre-op. (Courtesy Deanna Skillman) 
Ayden Skillman is wheeled into the operating room, left. The operation began at 9:30 a.m. and ended at 10:30 p.m. At right is an ultrasound showing his new heart for the first time. (Courtesy Deanna Skillman) 
Ayden Skillman had his breathing tube out 48 hours after the heart transplant operation. At right, he sits in a chair for the first time post-op. (Courtesy Deanna Skillman) 
Four days after getting a new heart, Ayden Skillman stands to get ready for his first walk with a new heart, left. At right, he takes that first walk. (Courtesy Deanna Skillman)
A Turn For The Worse
Things had begun to take a turn for the worse for Ayden not long ago.
A circulation issue caused a life-threatening infection in his leg, and it soon became clear that there weren’t any more tweaks left to keep his heart functioning.
That’s when his caregivers decided they should push to get him on the pediatric heart transplant waiting list, ahead of his 18th birthday, so he’d have a better chance of getting a heart.
“If you get on the adult list, it’s a very long wait list,” Deanna said. “For Ayden’s age, size and weight, those donors come in quite frequently on the pediatric list. The adult list, they just make it so hard to get the heart.”
Donate Life America estimates that 5,600 people die in the U.S. each year while on a transplant waiting list. That’s 16 people every day.
That’s not because there aren’t hearts out there. But many people are unaware of organ donation options.
One of the easiest is the box on driver’s licenses people can checkmark that signs them up for organ donation in the event they are in a fatal accident. One person can save up to eight lives, restore sight for two people and heal up to 75 people with various tissue and bone donations. People can also sign up to be an organ donor online at donors1.org.
Raising awareness of these issues is one of the reasons Deanna wants to tell Ayden’s story.
“Our biggest thing is just letting people know about CHDs and that they do exist out there,” Deanna said. “It’s really hard for Wyoming families, too, because Wyoming has never had a pediatric cardiologist.”
That has meant all of Ayden’s care has generally had to happen out of Denver, something they’ve been doing now for 18 years.
“Denver has cardiologists that will fly out to Casper or Sheridan, if that works for your schedule,” Deanna said. “But weather can kind of mess around with those appointments if you really need to have them on a routine basis.”
The only other option is a drive to Billings, Montana, to see the pediatric cardiologists there — but those professionals also come from Denver Children’s Hospital.
“So, it’s life-changing, because we don’t have the medical health care in the state to take care of these kids,” Deanna said. “And it’s not just us. It’s other families, too. You just never know how long your stay is going to be. It’s just depending on what your child’s condition is.”
Just In Time
Ayden had several factors working in his favor for a heart transplant. He is type A, the most common blood type. He also didn’t show any antibodies that would suggest an allergic reaction to a donor heart.
“And then just his size, age, height and weight were all like a perfect combination,” Deanna said. “He was listed in March of this year.”
“His heart health started (further) declining a few weeks ago, so Denver Children’s decided they wanted to admit him and put him on a medication called milrinone, which helps patients with failing hearts,” she added. “It’s kind of like an end-of-the-road medication when you’re on the transplant list.”
Deanna knew the medication was a signal that Ayden needed a heart, and needed it soon.
She was praying for a miracle and, just as the hospital was about to send Ayden to the Ronald McDonald house for outpatient care, a heart that matched him about as perfectly as possible came in. They’d only been in the hospital for four days.
Now it’s a wait-and-see game of another kind whether his body will accept its new heart, but Ayden’s prognosis is looking good so far.
“They’re going to start measuring his bloodwork on Thursday for rejection,” Deanna said.
Crazy Time For The Diner
Ayden’s heart showed up just in time from a health standpoint, but it’s a difficult timeframe for the family’s Greybull Diner & Bakery, which is a key part of their son’s future as well.
The shop received a $10,000 Backing Small Business Grant from American Express in partnership with Main Street America to do some renovations, including new tile for the kitchen, a new bar counter and a dish room with dishwasher.
That work was to begin July 28, the same window as Ayden’s heart surgery. To juggle this, the family pushed the renovation work out one week and created a plan to keep the restaurant going in shifts. Their plan is to remain open Wednesdays through Sundays.
They’re also scheduled for a visit from America’s Best Restaurants in August. America’s Best Restaurants is a road trip across America to highlight the best locally owned independent restaurants.
Keeping their restaurant going amid high inflation has been a challenge all on its own, and it has meant the family cannot afford to just close the business while Ayden’s transplant happens.
They have to find a way to keep the restaurant going at the same time.
“Transplants cannot happen without some form of insurance, or the ability to pay out of pocket,” Deanna said. “In 2020, the average cost of heart transplant in the United States before insurance was $1,664,800.”
The cost breakdown is:
• $49,800 for 30 days pre-transplant medical care
• $131,500 for organ procurement
• $111,100 for physician costs
• $270,300 for 180 days of post-transplant medical care
• $39,500 for immunosuppressants and other medications
• $1.063 million for hospital admission
Because of these expenses, friends of the family have set up a GoFundMe campaign for Ayden to help with expenses that insurance doesn’t cover.
Getting Ayden to this point in his life has been a long, expensive journey for the family, and the fight to save his life isn’t over just yet.
Like any journey of 10,000 steps, it’s happening one step, one day at a time. The family is thankful it’s a journey that they’re not taking alone.
An entire community has been following along, inspired by the heart they see in this family, as well as the heart Ayden himself has always had.
“I’ll get back on Facebook an hour or so after making a post and there will be like 500 likes on it,” Deanna said. “I’m like, ‘Geez, people are emotionally invested over this at home.’ And on his first day of surgery, there were people who literally stayed up until they knew he was out of surgery. So, this has affected a lot of people in the community, too.”
Renée Jean can be reached at renee@cowboystatedaily.com.
