Liver Families is an online community that I am part of. They have put together this montage for their 4th birthday! Check it out if you get the chance.
When we first learned that Monkey was diagnosed with a very rare liver disease, I joined an online community called Liver Families. Let me back up about 10 weeks. When Monkey was born, she was jaundiced. She literally came out of the womb jaundiced. They did tests at once, but she did not have to be seen in the NICU. The day before we were set to leave the hospital, we were seen by a GI specialist who told us that something was wrong with her liver. She threw a bunch of liver diseases at us. One of them being Biliary Atresia. She told us that she did not think that it could be that disease because it was very rare. For some reason, out of all of the diseases that she rattled off, BA stuck with me. Then, we were told that Monkey might not be able to go home with us because she needed more tests. I lost it when my OB walked into the room about 3 hours later. He calmed me down and told me that he knows what it is like to leave behind your little one. It made me feel a little better and in the end, Monkey got to come home with the promise of returning in 2 days for more tests at the GI Dr's office.
I started searching online for resources about liver disease and especially Biliary Atresia. As the weeks passed, Monkey continued to turn more and more yellow. She was actually on the orange side at one point in time. People told me all the time that she had such a beautiful complexion. I didn't have the energy to tell them why they were so wrong after I had already explained it for the billionth time that day. And as the weeks passed, I found different sites for liver disease resources, but most of them only had extremely sad stories of children not making it past 2 years old or past major surgery. It was deeply depressing and I was verging on panicking, though it really didn't show outwardly.
As Monkey's story goes, she did present her case very rarely. She's my child, why would she not be difficult? At 10 weeks 1 day her stool turned completely white. This was a major indicator of BA. I called her Pediatrician first thing Monday morning. By 5 p.m. that night he had arranged for us to take her to Children's Hospital for evaluation. He also asked me what I thought she had. I told him that I knew she had BA. He said that he thought so too, but was still optimistic. I don't know why I knew, I just did. Two days after we went to Children's, Monkey was in surgery for major reconstruction of her intestine so that the liver could, hopefully, drain bile. Two days after that, I found Liver Families.
I had decided to do one last search for liver disease and include the name of her sugery, the Kasai. Like magic, Liver Families was the first result to pop up. It was like the gods of the internet knew I needed these people. Liver families welcomed me and Monkey with open arms. They, along with our study coordinator and eventually our Transplant nurse, were the reason I remained sane through Monkeys hospital stays. I could ask them anything and they would always share their experience and expertise. I have never met these people, but I hope, pray, and cry for every single one of them and their children. My heart breaks and jumps for joy with every ounce of news I read. I truly hope that I am now helping others who are just starting this journey. Without Liver Families, I don't think that I would have made it to the other side of transplant as well as I did. Thank you Liver Families.
I can't stress enough how important Organ Donation is to the lives of people around the world. Especially our children, my children and my liver families.