“My 6-year-old son Amari was diagnosed with Alagille Syndrome at 5 months old. This was after I pressured his pediatrician to send him for emergency bloodwork. His was not one of the most severe cases. Amari’s biggest concern was his liver function. His skin and eyes were jaundice. His development was delayed, his skin was dry, cracked, and bleeding from the severe itch. He also had a heart murmur caused by narrower-than-normal blood vessels that took blood from the heart to the lungs.
Amari began seeing a liver specialist and started a treatment plan. He had been in and out of the hospital for routine bloodwork and testing. He started out with a couple medications but as the liver disease progressed, he required more, and the itch intensified. The itch became so severe that it was affecting his daily life, but a liver transplant was not even an option at this time.
At the age of 3, Amari was sent to the hospital for routine bloodwork and results showed abnormalities. I received a call from his liver specialist that Amari needed to be admitted into the hospital immediately for more bloodwork and testing. As a mother, my instincts were telling me that something was not right with my boy. I packed up and rushed Amari to the children’s hospital an hour away. We spent hours there, overnight. It was about 4 or 5 A.M. when Amari’s liver specialist walked in the emergency room. The look on his face told me the news was not good. And the fact that he got out of bed to show up to the hospital at 5 in the morning – said enough.
He told me that an ultrasound showed a lesion in the liver and that it was malignant. Amari was diagnosed with Hepatocellular Carcinoma, cancer of the liver. It is a RARE complication of ALGS. I was in shock, not only did my son through a genetic mutation suffer from a RARE liver disease but now he had a RARE liver cancer. The possibility of losing my son became more evident but the fight was on! A transplant team was put together for Amari & the journey to get him on the Liver Transplant List began. After several weeks of hospitals visits, hospital stays, appointments with several specialists, bloodwork, testing, biopsies, ultrasounds, MRI’s, and evaluations he made it on the list. It was another battle to get him to the top of the list.
We received two calls about a liver being available but due to unforeseen circumstances Amari was unable to have the transplant surgery. The lesion or tumor in Amari’s liver began to grow aggressively and the transplant team decided to explore other options. They wanted to perform a major surgery on my son, cutting off the blood flow to the tumor to keep it from growing or possibly spreading to other organs. I felt my son had suffered enough and was hesitant to have my son go through not ONE but TWO major surgeries. Before his scheduled surgery, I received another call about a Liver being available. And finally, my son received his liver transplant!
On November 20, 2024, my son will be 3 years post-transplant! We ran into some complications afterward, but they were treated immediately. If I had not been diligent in making sure my son made all his appointments, had routine bloodwork and testing, and stayed in constant communication with his liver specialist; we may not have caught the tumor in time! Routine bloodwork, testing & ultrasounds of the liver are so important in catching liver cancer in the early stages. The tumor in my son’s liver was found at the start of its growth, before it could burst or spread, and effect the rest of his organs. To this day, anything that concerns me, I am calling his doctor immediately! If you are a parent to a child with Alagille Syndrome associated with liver disease, it is paramount that you speak with your doctor about regular screenings for liver cancer! ”