FOX19 Change the Outcome Series

Hepatitis C: Liver Transplant Saves Alvin's Life

"He has a tremendous attitude."

In 1984 Alvin Santiago was born a 29-week preemie with many complications. He required blood transfusions, which at age 15 would threaten to kill him. In 2001 Alvin underwent a liver transplant at Cincinnati Children's Hospital Medical Center. Today, he's a junior at Northern Kentucky University, studying information systems.

"I'm at NKU. I'm going to start my 3rd year in August," said Alvin Santiago. Preparing for junior year at Northern Kentucky University is a major accomplishment for 22-year-old Alvin Santiago. Since birth, Alvin has had a number of health issues to overcome in his young life.

"He was born a preemie at just 29 weeks and had many complications when he was born. He needed blood transfusions back in 1984," said Edna Morales, Alvin's mom.

Despite cerebral palsy as well as other health complications, life went on for Alvin and his family in their native Puerto Rico. But in his teenage years, the blood transfusions that had saved Alvin's life now threatened to kill him.

Journey to Cincinnati Children's...and a New Country

"When my son was around 15 he began feeling symptoms, like being very tired and his skin began turning yellow as well as his eyes. Then we went to his pediatrician and he sent us to get lab work done to check for Hepatitis. It turns out he does have Hepatitis C. He got it from blood transfusions," said Edna.

Alvin needed a liver transplant. "Our doctor told us there were five different hospitals in the U.S. that we could choose from but the best was Cincinnati Children's and he wanted us to come here and that's how we came here," said Edna. The strong reputation of the Pediatric Liver Transplant Program at Cincinnati Children's has attracted referrals from physicians around the world who are looking for the best care available for their patients.

"Well, I was scared about going to the United States and then surgery like that, I had surgery before that but it was on my legs and it was easy but I was real scared with that," said Alvin.

An Urgent Liver Transplant

"He got off the plane and quite frankly he was vomiting blood. This is not uncommon when people with liver disease fly in pressurized cabins. So he was rushed to the emergency room by ambulance and we had quite a dramatic introduction to Alvin," said William Balistreri, MD, medical director of the Pediatric Liver Care Center at Cincinnati Children's. "Clearly a decision was made that he needed an urgent liver transplant."

"That night we got a phone call that there was a donor," said Edna.

"That doesn't always happen. Traditionally, we see a percentage of our patients who do not receive an organ. In other words they die while on the waiting list," said Dr. Balistreri.

"Alvin was very fortunate that he was not only in an institution like Cincinnati Children's, which could very rapidly reassess his situation and meet his support needs, but he also benefited greatly by the fact he developed a very good organ donor early in the course," said Frederick Ryckman, MD, surgical director, Solid Organ Transplant Program.

"All patients are placed on a nationwide list so when an organ does become available the individual that is neediest would get that organ. It's a very complex system, but the bottom line is that you have to be quite ill to reach a high enough priority," said Dr. Balistreri.

Overcoming a Language Barrier

Added to everything else Alvin was going through, he and his mom were also dealing with a language barrier.

"I was treated good, but at first I was kind of scared. English is not my first language," said Alvin.

"We were very fortunate that at Cincinnati Children's Hospital we have a group of interpreters who are readily available 24 hours a day who could assist us in his medical and social management. So we were able to communicate with both Alvin and his family," said Dr. Ryckman. "For complex issues they were more comfortable with Spanish and we had an interpreter who could easily meet those needs."

Alvin was in Cincinnati Children's for nearly 50 days and was well known by the GI (Gastroenterology) staff.

"We would hang out when I would work night shift. He would be up all night and we'd tell stories and have not-so-healthy snacks together," said Laura Olexa, registered nurse.

"About six months after the transplant we went on vacation to Puerto Rico and he became sick there. Our experience at the hospital there was not a good one, so that's when we realized we needed to stay here," said Edna. "The moment we walked through the door of the emergency room [at Cincinnati Children's] I knew we were going to be safe."

A New Beginning

To be close to Cincinnati Children's, Edna and her husband along with Alvin and their other two children, made a permanent move to Hebron, Kentucky, less than a year after Alvin's 2001 liver transplant. Alvin graduated from Conner High School in 2003 and now studies information systems at Northern Kentucky University.

"I guess I feel very proud of him because even though he's been through so many difficult things, he's still attending college," said Edna.

Edna began volunteering at Cincinnati Children's after Alvin's transplant and is now a full-time employee, working as a Spanish interpreter in the Family Resource Center. "I think the experience we have had here from day one was so good that I wanted to give something back. That's why I began volunteering," said Edna.

Since its inception in 1986, more than 400 transplants have been performed by the Cincinnati Children's Liver Care Team.

"We've had great success here at Cincinnati Children's over the years -- the 22 years now -- that the program has been in existence," said Dr. Balistreri. "I think Alvin is a remarkable young man who's overcome a number of difficulties, both those that affected him in the newborn period as well as the liver transplantation. He has a tremendous attitude and I think his prognosis is great."