Annaka Robison – Biliary Atresia

The Challenge: A Rare Liver Disease

Before she was even born in December 2015, Annaka Robison’s parents knew she faced serious health challenges. A routine sonogram revealed many birth defects, including omphalocele — a rare but fixable disease in which her intestines formed outside her body.

After she was born, Annaka had surgery in St. Louis. A few weeks of healing later, she went home to be with her parents, Josh and JaLana, and siblings, Ellyana and Wade.

“We thought everything was good. But two months later, she started turning yellow,” says Josh.

Blood tests found an elevated bilirubin level — a sign that Annaka's liver wasn’t working as it should.

A liver biopsy confirmed Annaka had biliary atresia. This rare and incurable disease blocks the bile ducts, trapping bile in the liver.

Annaka went back to St. Louis, where doctors did a Kasai procedure in hopes of delaying a liver transplant.

The Path to UPMC Children’s Hospital

By summer, Annaka’s bilirubin level was soaring again. Her skin turned yellow. Her belly swelled from fluid build-up and an enlarged liver, so doctors put the six-month-old on the transplant list.

Doctors inserted a feeding tube to provide nutrients.

“We were told she needed a transplant by her first birthday to survive. All we could do was wait and pray,” says Josh.

Back home in Effingham, the community rallied around the Robisons. They organized fundraisers and brought the family food.

Many offered to be Annaka’s liver donor, including their close friend, Nancy Ervin, who teaches with JaLana at Effingham Junior High School.

“I wanted to do whatever I could to help. As soon as I heard we had the same blood type, I said I’d do it,” says Nancy. “I believe God put us together for a reason. I just knew it was what I was supposed to do. I love that family. I wanted that baby to live, to run, to play, and to be happy.”

Nancy had testing and was a perfect match. But, doctors deemed Nancy a backup donor because Annaka was so small. They felt a deceased donor organ would be best.

As weeks turned into months, Annaka’s health declined.

Twice, the Robison’s got a call that a liver was available. And twice they made the trip to St. Louis, only to learn the liver went to someone else.

“We were devastated at first. We knew time was running out,” says Josh. “But I think it worked out for the best. Her doctors recommended UPMC Children’s Hospital of Pittsburgh for a second opinion. Because it has an outstanding reputation as a leading pediatric liver transplant program in the country.”

The Solution: Living-Donor Liver Transplant

Annaka turned one on December 18. Two weeks later — on January 3, 2017 — she and Nancy had a successful living-donor liver transplant in Pittsburgh.

Surgeons removed part of Nancy’s liver at UPMC Montefiore and delivered it to UPMC Children’s where surgeons had Annaka prepped for surgery.

Within one hour after Annaka’s transplant, her bilirubin level dropped dramatically. And within a few days, it was normal.

Both families texted updates back and forth during the two surgeries.

Nancy, who donated 25 percent of her liver, asked about Annaka as soon as she woke up in recovery. Discharged a week later, she went straight to Children’s.

“It was so nice to be able to touch her. And to see with my own eyes that she was doing well,” says Nancy.

The Results: Starting to Walk and Talk

Since the transplant, Nancy has fully recovered and ran a 5K to raise awareness for organ donations in the summer. She’s now training for the Illinois half marathon.

After her transplant, Annaka spent three months in Pittsburgh before returning with her family to Effingham.

Although the time in the hospital delayed Annaka's development, doctors expect her to catch up by the time she gets to kindergarten.

She has made progress learning to crawl and walk. And she's starting to talk.

“She has come a long way!” says Josh.

The Robisons are still in awe of the sacrifice Nancy made.

“She did a wonderful thing for our family,” Josh says. “She and Annaka will always have a special bond.”

Nancy agrees. “I feel this huge connection to her, and I feel I’m on this journey with them,” she says. “Knowing I saved someone’s life is amazing. I’m glad I did it, and I would do it again in a heartbeat.”