Our son, Aidan, was born on 24 December 2003. He was a healthy 3,040kg at birth. He became jaundice a few hours after birth and like all new-borns was put under the phototherapy lights. When we were discharged he was still jaundice but his doctor told us that his bilirubin levels had dropped and like most babies a few minutes in the sun would sort the jaundice out. Well Aidan did not get better, and the jaundice became worse so a few tests were done, bloods taken and a biopsy of his liver done, all before 3 months of age. Time was running out and at 10 weeks old he was diagnosed with Biliary Atresia, a rare, life-long and life-threatening childhood liver disease that has no known cause and no cure.
Biliary Atresia, is a childhood disease of the liver in which one or more bile ducts are abnormally narrow, blocked, or absent. It can be congenital or acquired. As a birth defect in new-born infants, it has an incidence of one in 10,000–15,000 live births. As first time parents this was devastating news and we could not understand why or how this could have happened to us. We had never heard of this disease before or even knew of anyone with it. We were heartbroken.
A few days after his diagnosis, at 12 weeks old, (which is quite late for doing the procedure), he underwent a Kasai Operation at Albert Luthuli Hospital. This is a procedure used to help bile drain, as the majority of infants diagnosed with BA end up needing a liver transplant before 2 years of age. Every year since Aidan was 1 year of age, we went to the Red Cross Children’s Hospital in Cape Town. Aidan had a group of wonderful professors, surgeons and specialist doctors who saw him and monitored his development. After the Kasai operation, Aidan began to grow and was like a normal child. The Kasai operation was a success as Aidan thrived with every passing year. Life was going well.
We were able to go on family vacations, we allowed him to live a “normal life” as best he could. We did not restrict him from playing sport although we had to monitor contact sports because of the enlarged spleen he was developing. Aidan also did very well at school even though we were told that due to his disease he may battle. Aidan got through all his childhood milestones with ease and did not seem to have any setbacks. There were times he had to be hospitalized for cholangitis but once he received treatment he was back to his lively self. So for 14 years of his life we pretty much had few complications.
Biliary Atresia is a progressive disease so we knew Aidan would need more intervention in the future. In January 2018 Aidan’s liver functions began to rise. His liver enzymes got higher and higher and he was being hospitalised for cholangitis more often. His team of Doctors in Cape Town felt that he now needed to be placed on the transplant waiting list as his liver was in failure.
Prior to his listing there were two nodules found in his liver. He was sent for an MRI to confirm what exactly they were. In June 2018 he had the MRI and it was found that he had Hepatocellular carcinoma which most commonly occurs in people with liver disease. This is a cancer of the liver. Aidan’s Doctors in Cape Town felt that he needed to be put as a priority as they did not want the cancer to spread further in his body or onto any other organs. We could not believe what we were hearing. It knocked us again as parents thinking what more. Why us? Aidan didn’t need this on top of his disease. It was incredibly hard to brace ourselves to tell Aidan what was going on.
Aidan being placed on the waiting list for a liver transplant felt not only scary but also exciting. We were filled with a whole lot of mixed emotions. We knew the day would come but you are never really prepared for it. Aidan was 14 years old when he was listed for a liver transplant… As a parent you just don’t know what to expect and how his body was going to manage the hours of surgery and the road to recovery. It was a really difficult time.
We had known about organ and tissue donation because of Aidan’s disease but no one can be fully prepared for what it entails and how things change around you. Our whole family are registered organ donors and there is no doubt that we fully support organ donation. Life was somewhat normal as Aidan went about his day to day activities with not many setbacks.
One evening in August 2018 at 23h45 we received the call from Mary, the transplant co-ordinator. That evening we also had our daughters school play on and had put our phones on silent and forgot to change the setting. It was truly God’s will that the phone was vibrating so loud and lighting up that Allistair woke up and answered. We were told to get into our car and be in Johannesburg at the hospital in five hours. We had 15 minutes to get what we needed and be on the road. We woke Aidan and the girls up, said our goodbyes to them and the 3 of us drove into the night to the hospital. We arrived there at 5am in the morning.
The transplant was the most physically, mentally and emotionally draining ordeal we all went through. Aidan has had a difficult road to recovery. He has had to have drains inserted into his liver to help with the bile strictures. He has been hospitalized for infections and super bugs he picked up. He has had three drains and each time they balloon the drain to make the bile duct remain open. He had his last drain removed on 10 April 2019. He is doing well and we are praying that from here on in he should be able to have a smooth road.
These bumps in the road mean we are still learning to see what works and what doesn’t with his new liver. So life is a little more hectic than it was prior to the transplant. However this all pales when you consider the enormous gift that Aidan has received. We would not be able to have a second chance with our son, Aidan, if his donor family had not made an incredibly difficult decision to donate their loved ones organs. . We will forever be grateful to the donor and the donor’s family who made this selfless decision in their time of pain to let our son fulfil his dreams.
Please consider REGISTERING as an organ and tissue donor. Remember to TALK to your family about your decision so that they know your wishes and of course SHARE your decision with others to encourage them to do the same. #BeAHero