Ethan Skacy is an average 13-year-old kid from Tuba City, Ariz., with one exception he has an unusual liver condition that caused his heart to fail.
But now, thanks to a rare surgery at Primary Children's Medical Center, he can look forward to a "healthy, long life," said gastroenterologist Linda Book.
Ethan is only the 15th pediatric patient in this country to receive a heart and liver transplant. It's the first such operation at Primary Children's.
He was diagnosed at age 10 with a condition called hypercholesterolemia, which meant his liver, due to a lack of enzymes, could not process cholesterol. Exceedingly high levels of cholesterol, in turn, clog the arteries of the heart. It is the result of an abnormal gene received from each parent.
Primary Children's physicians were treating Ethan's condition in hopes that a new liver could be found before it damaged his heart, Book said.
When that didn't happen in time, Ethan developed congestive heart failure. But his parents got a phone call that a donor had been found on Jan. 27, Ethan's birthday.
"We've had our up and downs," his mother said. "That was the most wonderful news."
The 19 1/2-hour operation to replace Ethan's heart and liver was completed on Jan. 31. Since then, Ethan said, he's been steadily improving.
"I'm feeling good," said the soft-spoken youngster at a Friday afternoon news conference. "I can walk up the stairs. I feel better."
Ethan thanked his doctors and others at Primary Children's who helped him and his family through the ordeal. He then thanked the family of the donor. Due to privacy considerations, the identity and age of the donor are protected. And then he thanked God.
"I would like to thank God for being there," he said. "I had faith in him, and I prayed a lot."
Asked what he looked forward to, Ethan said, "Playing guitar, going to school and being with my family again."
Ethan's parents, Francis and Jackie Skacy, also thanked God and the Primary Children's team.
"It was a dramatic experience," Francis Skacy said of Ethan's progressively worsening condition and the miraculous treatment. "It would literally bring me to my knees. Through prayer and God, that's what kept us going."
The double procedure, during which the heart is transplanted first, went "extremely well," Book said.
Ethan will remain at Primary Children's for another week or so, said heart transplant physician Kimberly Molena.
"He was fortunate that we found some good organs that he has done exceptionally well with," she said. "He is doing above and beyond what we expected."
Ethan and his father will then remain in Salt Lake City at the Ronald McDonald House for the next six months so he can receive further treatment. He will remain on medications for his heart and liver indefinitely.
Such heart and liver transplants are unusual, Book said, because young people rarely have both those organs fail. The last such pediatric operation in this country was in 2006.
Ethan's procedure puts Primary Children's at the forefront of such transplants. "But it may be six more years before anyone looks to us for this again," she said.