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Hearts of gold: Lilyas stay positive as health hardships continue

The Lilya family, front from left, Danny and Nick, and back, Michael, Elyse, Sheryl and Dan, poses for a photo on a recent trip to visit Nick in the hospital. Submitted photo1 / 5
Nick Lilya appeared to be a healthy 4-month-old infant. Nobody would guess by looking at him that all of his organs were on the opposite side, including his heart. He was flown to the Children's Hospital in the Twin Cities shortly after birth. His parents were initially told he would probably not survive. Submitted photo2 / 5
The Lilya family poses during Nicks wedding. Back row, parents Dan and Sheryl, middle row Michael and Elyse, front row Nick and Danny. contributed photo3 / 5
Nick Lilya is hooked up to machines Dec. 6. He had surgery and the breathing tube was supposed to be removed, but all of his stats dropped and he couldn't breathe on his own, so it needed to stay in. He still doesn't remember the next two days. Submitted photo4 / 5
Nick poses with his wife, Caitlyn, after their wedding. Submitted photo5 / 5

About 23 years ago, a beautiful baby boy was born to Sheryl and Dan Lilya of Moose Lake. Nick appeared to be a healthy baby at 8 pounds, 14 ounces and 24.5 inches long.

However, his organs, including his heart, were flipped to the opposite side of his body. The condition, dextrocardia with situs inversus, is very rare, occuring in about 1 out of 10,000 births. According to healthline.com, it is caused by an autosomal recessive genetic condition. Even if both parents are unaffected, they have a 1 in 4 chance of giving birth to a child with the condition.

A small percentage of people born with the condition also have congenital heart defects. Nick's heart has three chambers instead of four. The septum between his left and right ventricle didn't form, causing him to have one pump instead of two.

He was also born with two vertebrae in his neck that were fused together, but went undiagnosed until he was 4 years old. The young parents were shocked when they were told by a Essentia Health-St. Mary's doctor in Duluth to say goodbye to their newborn before he was flown to Children's Minnesota in the Twin Cities without much warning.

Nick survived, and within six months, had the first of several surgeries. His first surgery was for a shunt. Due to his single ventricle, when his little heart beat, the old blood coming from his body would mix with the new blood coming out of his lungs.

At age 2, Nick underwent a surgery to reroute his veins in his heart. The surgery was new at the time and considered quite difficult. Many children didn't survive.

At 7 years old, Nick was admitted to the hospital and quarantined when staff believed he had hepatitis. It was later discovered to be Kawasaki disease, which attacked his liver and heart. The rare disease causes the walls of the blood vessels to become inflamed, especially the coronary arteries, which supply blood to the heart. It can also affect lymph nodes, skin and mucous membranes.

It was almost two weeks by the time the correct diagnosis was made. The time lost caused more permanent heart damage for Nick.

At the same time, one of Nick's siblings, Danny, who was 6 months old, was having back surgery. He was born with a broken back, which caused him to be quadriplegic.

'The kindest person ever'

The Lilyas said they don't want to shelter their children. The couple encouraged all five kids to live their lives to the best of their abilities.

One way was by playing hockey. Dan became a hockey coach for several of his children's teams over the years.

Danny, a senior at Moose Lake High School, didn't allow his wheelchair to slow him down. He became a competitive athlete, playing wheelchair baseball and sled hockey.

The Lilyas said they don't want anyone to pity them.

"You get what you get," Dan said. "Be the best parents that you can and teach the kids to grow up and be good people."

Nick played goalie until he was 12 years old, when a doctor told the family he should no longer play contact sports. He was born with two vertebrae fused together, so a hard hit in a game could kill him.

"Nick is the kindest person ever," Sheryl said. "He would give anyone the shirt off of his back."

With a combination of being pulled out of sports and with his heart condition, Nick began to gain weight.

His health slowly declined, but he learned to adapt to his limitations with his standard acceptance and good humor.

He married his wife, Caitlyn, and they moved to Duluth in August. Soon after, Nick contracted an infection in both of his feet. The antibiotics killed the good bacteria in his body, and he contracted clostridium difficile, a bacterial infection. He still has lingering effects.

"It was one thing after another," Sheryl said. "Nick couldn't catch a break."

Nick had to be hospitalized, and he then contracted a streptococcus infection.

'It tears your heart out'

After Nick returned home in October, his mother and sister, Elyse, 14, stopped to check on him. When he didn't answer the door, they assumed he was getting some much-needed sleep and left.

"We had no idea he could not get off the couch because he was ill," Sheryl said.

When his wife came home from work five hours later, she discovered he had been vomiting blood. They were later told if she hadn't called the ambulance when she did, he would've died.

Nick was admitted into intensive care at Essentia Health-St. Mary's before being moved to Children's Minnesota.

The repaired vessel from his last open heart surgery was closing. His body had formed varicose veins that were taking up precious space in his left lung and preventing his blood from being oxygenated. Nick's heart and lungs were no longer pumping his blood efficiently.

He has had so many blood transfusions his parents lost count. Nick developed ulcers in his legs, which turned black from the knees down. He also began to retain large amounts of fluid.

Nick underwent heart surgery Dec. 6. His parents are hopeful he will be home by Christmas.

"He is so quiet; he doesn't say much," Sheryl said. "He always smiles and says it will be OK."

Nick has liver and heart failure. He has developed cirrhosis due to his organ issues. Some of the medications he has taken over the years have contributed.

"It tears your heart out," Dan said.

While his parents agree it has been a chaotic 23 years, they are thankful for the time they have and the memories made.

"There is always someone who has it worse than you do," Dan said.

Their son, Michael, is enrolled at the University of North Dakota in Grand Forks, where he is studying to obtain his pilot's license.

Danny is preparing to follow his big brother to UND, where he will be the first wheelchair student there taking air traffic controller classes.

Elyse is keeping her parents busy with her hockey games.

"Enjoy every day that you have with your children because you never know what the future holds," Sheryl said.