Last year, in honor of Biliary Atresia Awareness Day, my husband and I wrote about our son Jackson’s journey with biliary atresia. Today, one year later, we are celebrating our journey and the many blessings we have received, the wonderful care that Jackson received, and how he has inspired us to fight back and help others in need. For those who didn’t see last year’s article, Jackson was suspected to have biliary atresia after he had a HIDA scan in which the radioactive tracer that was injected never made it to his small intestine. This meant that bile was not flowing the way it should and was causing cirrhosis, or scarring of the liver. On Aug. 26, 2014, at only 8 weeks old, Jackson underwent surgery to have an intraoperative cholangiogram and liver biopsy. This confirmed that Jackson did in fact have biliary atresia and the Kasai procedure was performed, in which the liver is connected directly to the small intestine to drain bile.
Jackson, now 17 months old, continues to defy the odds each and every day. His Kasai continues to work, his bilirubin level remains normal, and his liver numbers continue to go down. We live daily with the fact that this could all change in an instant, but we continue to remain positive and live each day to the fullest. We are thankful every day that Jackson is here with us, to celebrate his life, and to cherish the milestones. We know that there are so many families out there grieving for their child as this devastating disease has claimed far too many lives. The last 15 months have not all been easy or filled with good news. We have had our share of ups and downs. We have had numerous hospital stays for fevers and infection, but overall, we have had more good days than bad, and for that we are grateful. Through the good and the bad, we have an amazing support system by our side. We know that there are so many families out there that are not quite as fortunate to have the same support we have. Having a sick child with a life-threatening illness is stressful enough. Every family should be able to have support through their time of need so they can focus on what really matters, their child. This is something my husband and I are working hard daily to change.
When Jackson was diagnosed, I had never felt so scared and helpless in my life. I cried myself to sleep every night and prayed for a miracle. On my hardest days, Jackson gave me strength, courage, and determination. I realized that I could either keep feeling sorry for myself, or I could wipe my tears and do something about it. The strength that Jackson has each day, and the will to fight and battle on has inspired us as parents so much, that we knew we wanted to find a way to shed some positive light on our situation. My husband and I have been lucky enough to take over a non-profit organization called The Children’s Liver Association for Support Services (C.L.A.S.S.). We wanted to find a way to help give back to those who are not as fortunate as we were in our fight against biliary atresia.
Children’s Hospital of Pittsburgh of UPMC is one of the top hospitals in the nation when it comes to pediatric liver care, and we could not be more thankful that Jackson is cared for there. The team of doctors who see Jackson have truly been a blessing. As hard as it is to accept sometimes, we truly feel like everything happens for a reason, and we have to take everything one day at a time. As of now, we know the only cure for biliary atresia is transplant, but we continue to fight, and we continue to hope. We have all the confidence in the world in our team at Children’s Hospital. We know that they are as passionate about finding a cure as we are.
Thank you to everyone who has been there for Jackson through the sleepless nights, the countless visits to the Emergency Department, and our inpatient stays. Thank you from the bottom of our hearts for making us feel loved, and giving us a comforting place to go. Thank you for giving us hope and allowing us to feel confident in trusting you with the precious life of our baby boy. We will continue to feel blessed and honored to be able to stand beside you, and say that we fought together in this battle against biliary atresia.
Like last year, we ask that on Dec. 1, 2015, you join us along with the Division of Pediatric Gastroenterology, Hepatology and Nutrition at Children’s and wear green in honor and support of not only our son Jackson, but every child fighting biliary atresia.