Blessings in Disguise
Carter’s Two-Year Journey to Having a Liver Transplant
Everything seemed perfect and life was blissful as our family welcomed Carter Owen into our lives on April 16, 2011 at 12:37 a.m. weighing 7 lbs 7 oz. In that moment, I began to know a mother’s love for the first time, a love that knows no bounds and continues to grow with each passing moment. Two days later we were home with our new bundle of joy. Under the request of our pediatrician, Carter had labs drawn the day after discharge. Carter was jaundice; however his pediatrician said he was okay so we thought he was too. There was mention by a few friends of the family about his jaundice as well. Carter soon developed bilateral inguinal hernias, which were soon to be interpreted as a blessing in disguise. When seeing the pediatric surgeon, who was to correct the hernias, he knew upon seeing Carter and his color, there was something going on with his liver. My husband and I began to research what was going on with our son, trying to learn about the possibilities. Carter had his first surgery at nine-weeks old to correct his hernias and attempt to fix his liver problem. When the surgeon injected a tracer through the ducts of Carter’s liver, it didn’t flow properly. The most common diagnosis of this, thought to be structural problem, is biliary atresia. This disorder occurs when the flow of bile either inside or outside the liver doesn’t work right. Carter had a gallbladder Kasai procedure to attempt to fix it. We waited anxiously to see if Carter’s surgery would be a success or our worst fear, a liver transplant would be in his future. I just knew in my heart he was going to be okay, but that would come in time, I would later find out, another blessing in disguise.
Carter didn’t get better and had a liver transplant evaluation in Houston at four-months old. A little over a month later, he stopped eating and a nasogastric (NG [nose to stomach]) tube was placed. I didn’t want to have it placed and thought there must be somehow we can get him to eat. It too was a blessing because it allowed him to receive nutrition. With liver disease it is common to loose appetite.
At seven-months old, Carter was put on the transplant list. Was this really happening? Carter’s conjugated bilirubin was 9.0 mg/DL. Divine intervention occurred over the next eight months, Carter became status seven (wouldn’t receive a liver if a donor became available because he was doing so well) and he was off the transplant list a few months after that at sixteen-months old. Almost a year to the date that Carter was listed his conjugated bilirubin was zero mg/DL! The older the child is going into a transplant, the better their chances and easier on the child, another blessing. We held out hope that Carter would be fine, an answer that was to come later, once again.
Late fall of 2012, labs and scans were run, which yielded the result of a nodule on Carter’s right lobe of his liver. This was to be watched as the doctors thought it was progressive scarring on his liver. Cirrhosis or scarring of the liver in Carter’s case results from bile in places where it shouldn’t be. It becomes a toxin to the liver, scarring it. He also had bilirubin accumulation in his skin which caused him to itch. Aside from continued therapy, which started when he was nine-months old, to work on areas delayed because of all his medical experiences and the NG tube, Carter was doing considerably well. He began to itch more in December of 2012. He would scratch to the point of making himself bleed. This was his liver and God’s way of getting our attention again. The doctors would soon find a new nodule in Carter’s left lobe of his liver in March 2013. After a closer look at the original nodule, which was now getting bigger, they confirmed that Carter had hepatocellular carcinoma. This form of cancer evolves from scar tissue and its only form of treatment is removal. Carter was listed as soon as he could be after given this diagnosis. Upon hearing "cancer” and that its only form of treatment was removal, my husband and I went into research mode. We had an appointment for living donor evaluation and attempts to get him dually listed while we waited. Again by the grace of God and so many intercessory prayers, that didn’t come to pass. All this time we hoped he wouldn’t get a transplant and now we wanted one. After thirty-two days in the hospital, eighteen additional days of testing, and listed for only six days, Carter was getting his new liver!!! So many mixed emotions were going on during this survival mode time, one of which was the realization that another family was losing their child as we were gaining ours. What a sacrifice on their part, they were literally allowing Carter to live by giving us a part of their child on April 24, 2013 at 5:50 a.m.
Carter spent sixteen days in the hospital because he retained fluid after contracting a virus. We also had two other post-operatory stays totaling nine days due to another virus. While Carter was in the hospital we began to see just what a good liver can make you feel like. Carter was always a happy, good child but now we had a silly, giggly little boy. About a month post-transplant, at twenty-five months old, Carter began to WALK!!! After twenty-two months of having a NG feeding tube, four months post-transplant, Carter was EATING by mouth!!! Carter’s diagnosis, hypercholanemia, came seven months post-transplant. This genetic disorder causes the cells to be leaky, allowing bile into places it shouldn’t be. The range of symptoms of this disorder can be mild to extreme like Carter’s case.
If you didn’t know that he had a liver transplant, you wouldn’t be able to tell. We are still working on a few delays in therapy but Carter is so blessed as we are to have him, all because of a multitude of intercessory prayers, support from our doctors, therapists, community, family, friends, God and our donor family chose to give the gift of life. Along this journey, I kept thinking this is it, but it was only time for another blessing in disguise. All who lives have been touched by Carter have grown so much. We are all so much more appreciative of the little things; they are so beautiful through our eyes. We are appreciative for life, we marvel at Carter being able to eat by mouth, and it brings tears to our eyes to see him play like a "normal” child. I am not the same person I would have been if this didn’t happen in my life. I feel Carter’s story isn’t just for us. Question everything, marvel in every moment, praise God always, and give the gift of life.