It was November 2014. I was already single with 4 kids, two requiring ongoing regular medical care, and had no intention to bring home one more child. God had other plans. Our intention was to go and serve. To use my skills as a pediatric OT to serve the caregivers and children in orphanages. And then I met her. Our eyes locked and her eyes pierced my heart. She was tiny and jaundiced. Her abdomen was hard. She had biliary atresia. And during her transplant surgery it was also determined that she had a choledochal cyst (cyst of the bile ducts).
Biliary atresia is a condition where ducts to drain bile (which is made in the liver and necessary for digestion) become blocked. Bile can no longer drain from the liver and instead starts destroying it. This destruction becomes deadly. There is no cure. A surgical procedure to "re-route" the bile into the intestines can be successful for some patients. This surgical procedure must be done very soon after birth in order to give the best chance for success. And even when done early, most babies will still go on to need a liver transplant in order to survive.
Liver disease is beastly. As the bile becomes stuck in the liver, the liver itself hardens and the abdomen swells in size. Sometimes the spleen also becomes swollen. Fluid can build up in the abdomen. The size of the enlarged organs makes it hard to eat and breathe. The bile build up causes intense internal itching, making it difficult to rest. Because the damaged liver can no longer aid digestion, malnutrition sets in. Muscles become wasted. The body's ability to clot becomes impaired risking bleeding to death. Infection is another threat to a baby's life with both infections of the liver and systemic sepsis. These are all of the realities of end stage liver failure.
The only "treatment" for end stage liver failure, which is the diagnosis that most babies with biliary atresia will end up with, is a liver transplant. It is not a cure. It.is.not.a.cure. One condition is traded for another condition with liver transplant. Sometimes I look at my girl and she just looks so good. And she is doing so remarkably well. She is so much better than when she was obviously gravely ill. Yet, the previous issues are traded for new ones. She will continue to need regular lab work for the rest of her life. She will continue to need twice daily immune suppression medications for the rest of her life. This lowers her ability to fight infections. She will continue to need medications to protect her kidneys and combat her high blood pressure which result from her immunosuppressants. She is at higher risk for food allergies and certain cancers. She could lose her liver to rejection. In some ways, it can be terrifying to think of all of the what if's...
Instead, we choose to focus on today. Today, she is running around with boundless energy, all because of her liver transplant and our hero donor. Today she is talking, all because of our donor. Today, she is making us laugh with her incredible sense of humor, all because of our donor. Today we soak in the joy she brings, all because of our donor. Today, we bring awareness of her miracle story during liver disease awareness month, all because of a great God who wove our lives together.
In many ways I am so glad I did not know God's plan back in November 2014. I would have been too afraid to meet her knowing what was in store. It's a thought that makes me shudder. Because then, we would have missed this. We would have missed all of this. The world would have missed out on the chance to watch her miracle life unfold. An orphan dying of liver disease given no hope becomes a cherished daughter who, against every odd, lives. She lives so well, with such zest and joy. We would have missed out on on the greatest gift and lesson of having this little one in our lives: loving each other while living each day in the moment.