We are the Bird family: Kevin, Julia, and ALGS Warrior Luke. We live in Washington state just south of Seattle and have been fortunate to meet other ALGS Warriors in our area. Before Luke, I had no idea what Alagille Syndrome was. Since Luke’s diagnosis in 2017, our lives have drastically changed.
Luke was born with jaundice and was diagnosed with hyperbilirubinemia shortly after his birth. He was admitted to the NICU for a week after he was born where various tests were done to try and determine what was causing it. We were told that the bilirubin lights would work and that this was extremely common in newborns. I was a new mom and all of this came at me like a whirlwind, but I was hopeful this storm would quickly pass. The weeks to follow were filled with different appointments and tests to figure out why the jaundice had not subsided, yet we were still told that it was common for the liver to be a bit delayed in “waking up” the weeks following birth. The weeks turned into months, and we still did not have a clear answer after several scans, appointments, and an exploratory and corrective surgery. Our hope was beginning to fade, and I knew in my heart there was something very wrong with our baby. When Luke was 3 months old, we finally had a diagnosis: Luke had Alagille Syndrome and there was no cure. We were informed by Luke’s hepatology team he would most likely require a transplant before he was 5 and that we just had to take it day by day, lab draw by lab draw, and try to best support the horrific symptoms his diseased liver caused.
As the weeks passed, Luke’s liver continued to get worse, his itching was unbearable, and he developed severe bleeding issues that required weekly infusions. We drove to the Seattle Children’s emergency room in the middle of the night more times that I can recall, dealt with constant vomiting, severe itching, unstoppable bleeding, an NG tube, and endless appointments. We were in a very dark, terrifying tunnel with no light at the end of it. When Luke was 5 months old, we were finally given that light: he was listed for a liver transplant. It was a surreal, intense realization that Luke would need a liver transplant to continue his life, and the wait for that call was gruesome. After six months of waiting, two weeks before Luke’s first birthday, we got the call that changed everything. They had a liver match for Luke. On January 31, 2018, Luke received his life-saving liver transplant. While this gift has changed our life, Alagille Syndrome didn’t allow our journey with rare disease to stop there. It continued to rear its ugly head following Luke’s transplant, and we knew we were still at the beginning of a lifelong journey battling this disease. Since transplant, Luke has endured over forty surgeries and procedures, hundreds of blood draws, and countless nights inpatient.
Alagille Syndrome has had a massive impact on our life since the day Luke was born. I left my job to care for Luke full time at home, while Kevin often works long hours and two jobs so we can continue to make ends meet. But what has been most significant is the grief our family has felt over the years. We grieve the fact that our journey with parenthood has been robbed of many of the “normal” experiences. We see our friends and families with young children experiencing life not burdened by chronic, rare disease and find ourselves grieving for what could have been. While they are planning trips to Disneyland, we are planning our weeks and days around hospital trips, medications, and g-tube feeds. And the grief of this is very, very real. Over the years, I have struggled tremendously with mental health and medical PTSD, formally getting diagnosed in 2019. I have suffered from panic attacks, flashbacks, and debilitating anxiety that has prevented me from enjoying even the calm moments in our life. Kevin and I often are forced to put our needs and health on the backburner as we learn to navigate this journey.
Nevertheless, there is a beautiful side to this journey, a light in the darkness. Our journey with ALGS has taught us to never take a single moment for granted, both good and bad. It has taught us to take life one day at a time (sometimes one hour at a time) and have hope even when hope doesn’t seem possible. This journey has taught us the value of community and the impact those who are walking a similar journey can have on your life. Without the ALGSA and the ALGS community, I would have lost so much hope along the way. They root you on in the darkest and brightest times, every step of the way. What I would tell a new family is to cling to hope as much as you can and find that hope wherever you can. For us, it was through the ALGS community, through our families, and through the ALGSA. We stand together, parents of the lost and sick children, and form a strength that can withstand any ALGS storm.