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SALT LAKE CITY — Ethan Skacy doesn't want to take his new heart and new liver on a trip to Disneyland or to go skydiving.
The 13-year-old boy just wants to be able to run, play his guitar and go to school.
He is only the 15th pediatric patient to undergo a combination heart-liver transplant since 1997 and the first in Primary Children's Medical Center history. His family has traveled the eight hours each way back and forth from their home in Tuba City, Ariz., to make it possible and Ethan could not be more grateful.
"I'd like to thank my dad for being by my side when I went into the operation room," the boy said, pausing to wipe his eyes. "He stayed there even when I was asleep in the ICU."
"It's a lot to go through," Ethan added.
Ethan was diagnosed with familial hypercholesterolemia at 10 years old, but exhibited symptoms of the genetic condition when he was only 5. Dr. Kimberly Molina, a heart transplant physician, said the defect makes it so the body has a difficult time eliminating fatty deposits.
We've had no problems with rejection. He will continue to take rejection medication, (but) we look forward to a healthy, long life for this young man.
–- Dr. Linda Book
In Ethan's case, there was cholesterol buildup in his arteries that could have been remedied by a new liver. As he waited, he underwent a treatment that removes some of the cholesterol from the bloodstream. But in November, his condition worsened and the blockage caused by the cholesterol buildup in his arteries damaged Ethan's heart irreparably.
"His heart was not as efficient at getting blood where it needed to," Molina explained. "(Ethan was experiencing) chest pains, he was short of breath. There was an increase of fluids and in order to fix these problems, it was going to require a transplant."
Francis Skacy, Ethan's father, said Ethan's illness has been a "traumatic experience" for the family. He spent a lot of time on his knees praying to God for help. His wife and his son echoed that it was their faith that helped them through this process.
"I thank God for being there," Ethan said. "I have faith in him."
Skacy said he will never forget taking the call that a suitable donor had been located. It was Jan. 27, his son's birthday.
"I actually broke down about that call," he recalled. "My mind went blank. I started calling everyone in my phone."
"It was wonderful news," Jackie Skacy, Ethan's mother, said.
Ethan underwent a 19 ½-hour surgery starting Jan. 30 and continuing into Jan. 31. Doctors said they first transplanted his heart before adding the liver.
This is the first pediatric transplant of its kind since 2006, primarily because the need for it is so rare, according to doctors. Jeremiah Radandt, the hospital's chief financial officer, said Primary Children's employees are "honored and humbled" that the Skacy family chose them for their son's care.
Ethan said he was scared going into the operation and remembers his father telling him how much it would mean to him if Ethan would wake up and let him hold him again.
I'm just glad he gave up his organs and his heart to me. I think he's a special person.
–- Ethan Skacy
"I woke up Feb. 12 — two days before Valentine's Day," Ethan said. "I'm glad I woke up."
Those at Primary Children's reiterated that the operation was a team undertaking and Dr. Linda Book, gastroenterologist, said she was "proud and pleased" to have been a part of it.
"The transplant went extremely well," Book said. "We've had no problems with rejection. He will continue to take rejection medication, (but) we look forward to a healthy, long life for this young man."
Ethan thanked those who completed the transplant and kept him alive. He also had words of gratitude and appreciation for the family who decided to donate the organ of their loved one.
"I wouldn't be here without a new heart and new liver," he said, adding kind words for the anonymous donor whose organs saved him. "I'm just glad he gave up his organs and his heart to me. I think he's a special person."
Hospital officials did not provide information on the age, gender or location of the donor, citing privacy considerations.
"We feel very fortunate to have organs that are a great fit for him," Molina said.
Ethan is expected to leave the hospital next week. The family has been staying at the Ronald McDonald House and Ethan and Francis Skacy will stay there for the next six months as Ethan continues to recover.
The boy said that he wants to go to college someday and study to be a surgeon. But, before that, he plans to get a driver's license and mark a definitive "yes" to the question of whether he wants to be an organ donor.
