My son Nathan was born with a rare liver disease, called biliary atresia (BA). BA is when the bile ducts are blocked, not allowing normal bile flow and causing damage to the liver, which is life threatening without treatment. Nathan was diagnosed with BA at age 6 weeks at Ann and Robert H. Lurie Children’s Hospital of Chicago, now a very familiar place to us. He went through his first procedure called a Kasai, which is a surgical treatment to try and help the bile drain and not cause further damage to the liver. Three months following the Kasai surgery, it was clear the procedure was deemed unsuccessful, the liver started to deteriorate, and a liver transplant would be the only treatment to save his life. At the time of his transplant evaluation, we learned Nathan was very fortunate that he was a good candidate to receive a living donor liver transplant, and his team of doctors informed us that this would be his better outcome in surviving his liver disease. We started identifying friends and family who might be suitable donors, and in that process, we also found complete strangers who were willing to help save Nathan’s life. The living donor process can be lengthy. The medical team for the donor looks at blood type, medical history, and the psychological and social support. The possible donor will also have imaging done, and in some cases, a liver biopsy is performed. We had a couple of family and friends go through this process only to find out that they were not a match for Nate. Then, while Nathan was admitted to Lurie Children’s Hospital to treat an episode of cholangitis (a serious infection of the liver’s bile ducts), I received a phone call that I will never forget. A dear friend of mine called to tell me that she learned she was a match for Nate and that she accepted to be his living donor. I think this was the first time that I had exhaled in months. Tears of so many mixed emotions started to fill my eyes. She was our hero, Nathan’s guardian angel. At 10 months old, Nathan and my dear friend went into surgery, he received his gift of life, she recovered fully, and to this day, they both have never looked back.
Today, the posttransplant care Nate receives is a multi-disciplinary approach. This includes Pediatric Hepatology, Nutrition, Social Work, and any other departments deemed necessary to providing the best care for my child (e.g., General Pediatrics, Allergy, Dermatology, Dental, etc). Nathan goes to clinic every 6 months right now, has routine laboratories, and sometimes imaging to make sure his transplanted liver is functioning properly. Part of the transplant recovery or treatment is being on immune suppression medications. These medications allow Nathan’s body to continue to keep the graft he received, and he will be on these for the rest of his life. His transplant team works very closely with other disciplines to help manage his general care so he can continue to have the best quality of life possible post liver transplant.
