Liver transplant recipient Frank Sroka Vulich-Ferro, shown with his mother, Gia, now is a healthy, happy Bridgeport youngster. (Photo by Troy T. Heinzeroth)

Two-year-old Frank Sroka Vulich-Ferro of Bridgeport is nothing short of a miracle.

Named for his Chicago firefighter grandfather, at just six weeks old he was diagnosed with biliary atresia — a rare liver disease found in only one of every 20,000 births, and even rarer in boys.

Those with the disease are not expected to make it to two years, but Frank was strong. On Dec. 18, he received a portion of a donor liver that was shared between him and a teenage boy who also needed a transplant at Children’s Memorial Hospital.

On Sept. 20, 2007, Frank went for his six-week check-up at Rush University Medical Center. The doctor thought he looked a little jaundiced.

“I’m Italian,” said his mother, Gia Sroka. “I thought he was just getting good skin coloring. We thought he was normal.”

Blood tests, however, showed that Frank had a liver disease.

“The first thing I did was get on the internet and I was searching for top doctors,” said Gia. “They said he had a liver disease but not exactly what. Not knowing what disease made it harder to deal with. Thank God Rush Hospital had a computer for us to use, because we were there for two nights.”

On the internet, Gia found Peter Whitington, MD, and Marleta Reynolds, MD, at Children’s Memorial Hospital.

At a tender eight weeks old, Frank had a Kasai procedure at Children’s Memorial Hospital, performed by Reynolds. The Kasai procedure is an operation to create an open duct so bile can drain from the liver. The surgeon removes damaged ducts outside of the liver and replaces them with a piece of the baby’s own intestine. Gia said this procedure works in 20% to 40% of children, but Frank’s failed.

One last hope

A liver transplant would become Frank’s only hope.

For the next two years Frank had to take nine different medications in the morning and at night. Gia said it took some time for him to get used to the taste, but after two months it became routine. He also had to visit the clinic at least once a month — usually, every two weeks.

“They couldn’t find out why Frank was still doing well at two years; you weren’t supposed to live that long” with biliary artesia, she said. The average transplant in such cases is done at 14 months, and Frank had already lived beyond that.

The Sroka family spent months trying to find a match for Frank. Testing for donor capability was a slow process, she said. It took one month for her cousin’s results, and four months for her husband, Harley’s. Gia wasn’t a match. Harley was a match, but the piece of liver needed was too big for Harley to be able to donate. The cousin was a match, but risk factors eliminated that donor as well.

Gia wasn’t about to give up. She took the reins and worked on finding a donor for her son herself. She found www.matchingdonors.com, a Web site that matches people in need of a transplant with those willing to become a donor. The site has generated 475 matching transplants.

Gia found 21 people willing to donate part of their livers to Frank. She sent them each a ten-page form from Children’s Memorial to become a donor.

Sroka family members tried to keep their lives as normal as possible through all of the waiting. “We went to the doctor, we would go to Lincoln Park Zoo,” said Gia. “I never wanted to treat him different. We cried, we would go through ups and downs. It was a rollercoaster.”

A morning phone call

On Dec. 17 at 8:44 a.m., Gia received a call from Children’s Memorial saying there was a potential donor and to get to the hospital within the hour.

“I was sort of stunned and shocked,” said Gia. “I didn’t know who the potential donor was, whether it was my cousin or if they secretly tested one of the 21 people I had from the site.”

When she found out the donor liver was coming from a teenage boy from Minneapolis who had died, the first thing she did was pray for the boy and his family.

“I had to collect my thoughts; I was shaking, I was crying,” said Gia. “I was excited that it was really going to happen but petrified because I didn’t know if it was going to work.”

The doctors said the donor liver was perfect. “This assured me this was the liver for Frank.” All the waiting, and not finding a suitable donor right away, had paid off. Gia said she knew there had been a reason Frank was holding on for so long; it was because “this was his liver.”

Gia did not find out that Frank would be sharing the donor liver until later. “I just heard a mother down the hallway say that someone else was getting a liver transplant,” she stated. “I was wondering, ‘Huh, I wonder what liver she’s getting? I hope not mine.’”

Split-liver transplants are rare, and this was the first performed at Children’s Memorial. The operations on Frank and on teen recipient Christian Liberto occurred simultaneously At 3:45 a.m. on Dec. 18, Gia had to hand over her only son to a team of 16 surgeons, anesthesologists, and transplant nurses led by Riccardo Superina, MD. The team would perform the two eight-hour operations simultaneously.

Frank would get the upper left lobe of the liver, the smaller part. The other boy would get the larger, lower right portion.

“Handing him over was the hardest thing,” said Gia. “You never know if you’re going to see him again.”

Gia spent six hours pacing the hallway and praying the rosary before sitting down to talk with family, she said, noting “I needed to be alone. I needed to relieve the energy and I was pacing and praying.”

The operation was a complete success, and Frank’s follow-up visits have been great, according to Gia.

“He looks hairy,” she said with a laugh. “One of the medications makes you hairy.” He still takes nine medications, but after six months, she said, the number will decrease, as many are to ward off infection and to strengthen his immune system so he doesn’t reject the liver.

Now, Gia and her family are relieved and happy that Frank’s ordeal is finally over. She says she thinks about the boy who died and his family often. She plans to write the family and tell them of how their son saved Frank’s life. The public can contribute to an account in Frank’s name at Chicago Community Bank, 1110 W. 35th St., Chicago, IL, 60609. Call (773) 927-6200.