Annika was born in October 2000 and was jaundiced from birth. At 5 weeks she was diagnosed with biliary atresia and had the Kasai operation. The Kasai appeared to be successful at first, as bile flow was restored. However, at 3 months she was showing definite signs of continuing liver failure -- ascites and esophageal varices.

At 7 months, she developed 2 large bile lakes in her liver. Two bile drains were placed, which emptied the bile successfully, but led to chronic cholangitis. Although she clearly needed to be transplanted soon, problems with her portal vein meant that a living donor was not a safe option for her. So we waited in the hospital for a donor. As the wait in the hospital dragged on for months, the doctors in Chicago decided that it might be time to consider the living donor surgery after all as the bacteria in and around her liver were becoming more and more resistant to antibiotics. My husband and I were devastated to learn that neither of us have a compatible blood type to Annika, but my cousin, Eric, volunteered to donate. However, during his angiogram he suffered a collapsed artery and was disqualified as a donor for several weeks. It wasn't clear that Annika had several weeks, though. Her decline was becoming more rapid every day. We kept hoping that she would hit another plateau, but things just kept getting worse. She spent nearly all her time asleep, but when she did awake every couple of hours or so, she just screamed. She did not always recognize me. Eric's brother, Cliff, decided that he could overcome his fear of surgery and volunteered. But then Annika began to have serious trouble breathing--watching her struggle was so scary--and she was moved to the ICU.

Amazingly, a donor was found for Annika just 8 hours before Cliff was scheduled to begin his surgery. When the surgeons opened Annika up, they discovered that the living donor surgery definitely would not have worked with her because of the problems with her portal vein. It was truly a miracle that a donor was found for her at the last minute. The surgeons also finally found the source of Annika's constant infections for the previous 5 months--she had two huge abscesses behind her liver. Evidently, her liver had hidden these from the MRI and CT scans that they had done to try to find the source of her infection.

Annika had a very long recovery after the transplant because of the infections and also because it took a while to wean her off the ventilator due to her pre-transplant breathing difficulties (she had fluid in her lungs). About 2 months after her transplant, we finally got to go home. She was like a new child--amazing energy and a great appetite. She put on nearly 4 pounds and grew 2 inches! However, we were only home for 10 days before we ended up back at the hospital. Annika developed a clot in her hepatic artery that could not be fixed surgically, and we were told that she needed to be retransplanted.

My cousin, Cliff, got the call again, and he once again flew to Chicago to donate. Since her portal vein had been repaired with the first transplant, a living donor transplant was possible this time. Three months later we finally took her home. After 10 months in the hospital, 1 month on a ventilator, Anni was pretty delayed. However, lots of speech and physical therapy had her caught up within a year. Finally at home and finally feeling good, she seemed the happiest girl in the world!

****************update 1/13/04****************
Annika still seems the happiest girl in the world! Even just taking a walk in the mall, she makes everyone she passes smile because she's just so goofy with joy. Two years post-transplant, we are still waiting for normal labs and a normal belly size, but there's no denying how much better she is feeling these days. Her m.o. for every day is constant motion, with running commentary for anyone who will listen. She is also now the loving (and I do mean *loving*) big sister to Franciska (Frankie), who adores her.

Our gratitude to both donors is unending. It's amazing and astounding to be the recipient of such kindness and generosity. And, of course, the medical staff at Chicago is awesome. I can never express how grateful we are for each day with our little girl.

Annika was born in October 2000 and was jaundiced from birth. At 5 weeks she was diagnosed with biliary atresia and had the Kasai operation. The Kasai appeared to be successful at first, as bile flow was restored. However, at 3 months she was showing definite signs of continuing liver failure -- ascites and esophageal varices.

At 7 months, she developed 2 large bile lakes in her liver. Two bile drains were placed, which emptied the bile successfully, but led to chronic cholangitis. Although she clearly needed to be transplanted soon, problems with her portal vein meant that a living donor was not a safe option for her. So we waited in the hospital for a donor. As the wait in the hospital dragged on for months, the doctors in Chicago decided that it might be time to consider the living donor surgery after all as the bacteria in and around her liver were becoming more and more resistant to antibiotics. My husband and I were devastated to learn that neither of us have a compatible blood type to Annika, but my cousin, Eric, volunteered to donate. However, during his angiogram he suffered a collapsed artery and was disqualified as a donor for several weeks. It wasn't clear that Annika had several weeks, though. Her decline was becoming more rapid every day. We kept hoping that she would hit another plateau, but things just kept getting worse. She spent nearly all her time asleep, but when she did awake every couple of hours or so, she just screamed. She did not always recognize me. Eric's brother, Cliff, decided that he could overcome his fear of surgery and volunteered. But then Annika began to have serious trouble breathing--watching her struggle was so scary--and she was moved to the ICU.

Amazingly, a donor was found for Annika just 8 hours before Cliff was scheduled to begin his surgery. When the surgeons opened Annika up, they discovered that the living donor surgery definitely would not have worked with her because of the problems with her portal vein. It was truly a miracle that a donor was found for her at the last minute. The surgeons also finally found the source of Annika's constant infections for the previous 5 months--she had two huge abscesses behind her liver. Evidently, her liver had hidden these from the MRI and CT scans that they had done to try to find the source of her infection.

Annika had a very long recovery after the transplant because of the infections and also because it took a while to wean her off the ventilator due to her pre-transplant breathing difficulties (she had fluid in her lungs). About 2 months after her transplant, we finally got to go home. She was like a new child--amazing energy and a great appetite. She put on nearly 4 pounds and grew 2 inches! However, we were only home for 10 days before we ended up back at the hospital. Annika developed a clot in her hepatic artery that could not be fixed surgically, and we were told that she needed to be retransplanted.

My cousin, Cliff, got the call again, and he once again flew to Chicago to donate. Since her portal vein had been repaired with the first transplant, a living donor transplant was possible this time. Three months later we finally took her home. After 10 months in the hospital, 1 month on a ventilator, Anni was pretty delayed. However, lots of speech and physical therapy had her caught up within a year. Finally at home and finally feeling good, she seemed the happiest girl in the world!

update 1/13/04

Annika still seems the happiest girl in the world! Even just taking a walk in the mall, she makes everyone she passes smile because she's just so goofy with joy. Two years post-transplant, we are still waiting for normal labs and a normal belly size, but there's no denying how much better she is feeling these days. Her m.o. for every day is constant motion, with running commentary for anyone who will listen. She is also now the loving (and I do mean *loving*) big sister to Franciska (Frankie), who adores her.

Our gratitude to both donors is unending. It's amazing and astounding to be the recipient of such kindness and generosity. And, of course, the medical staff at Chicago is awesome. I can never express how grateful we are for each day with our little girl.