My name is Jessica. I'm 8 years old. I was born with a rare childrens liver disease called Biliary Atresia, which is the congenital absence or closure of the ducts that drain bile from the liver. The cause of Biliary Atresia is unknown. I am going to need a liver transplant in the near future.
This website was made to share my story of living with liver disease and to keep family and friends updated on my current health issues and daily life. We will also be updating any fundraising events that we will be doing.
Jessica’s Story:
Jessica was born on December 31,1998. She was a beautiful baby and appeared to be healthy. When Jessica was 4 months old, she became very jaundice. Her skin and the whites of her eyes turned yellow. After numerous tests, a liver biopsy, ultra sounds, and exploratory surgery, Jessica was diagnosed with a very rare form of children’s liver disease called Biliary Atresia. The bile ducts in Jessica’s liver never formed properly, causing bile to be trapped inside her liver. The liver then becomes damaged and very scarred, resulting in cirrhosis. The cause of Biliary Atresia has not yet been discovered. Jessica has already had a type of bypass surgery to help her liver drain, called a Kasai. Shortly after the Kasai procedure was performed, Jessica got a serious bacterial infection called cholangitis, which sometimes occurs after the Kasai. If left untreated cholangitis will be fatal. Jessica was given IV antibiotics for a little over 4 weeks to get rid of the cholangitis. At 8 months of age, Jessica became very sick and her skin started to turn yellow again. She was diagnosed with cholangitis for a second time. Her liver specialist decided to keep her on antibiotics on a daily basis. Besides the daily antibiotics, Jessica also takes a medication to help her liver drain easier, one to help her blood clot properly, a fat-soluble multi vitamin, and a medication for acid reflux.
The Kasai procedure did work for Jessica, but unfortunately, the Kasai in Jessica's case, is not a cure. Jessica is showing signs of progressing liver disease and its complications. She has cirrhosis, an enlarged liver, an enlarged spleen, portal hypertension, problems with her blood not clotting properly, and varices. We have been told that Jessica will need a liver transplant in the near future. Currently, Jessica sees a Pediatric Gastroenterologist at Shands Children’s Hospital in Gainesville, Florida on a regular basis and has routine blood draws, ultrasounds, and other tests when needed.
An Update about Jessica's Health: A New Illness
As of last September, Jessica was diagnosed with a new illness called Gastroparesis. Gastroparesis is a digestive disorder in which the motility of the stomach is either abnormal or absent. In health, when the stomach is functioning normally, contractions of the stomach help to crush ingested food and then propel the pulverized food into the small intestine where further digestion and absorption of nutrients occurs. When the condition of gastroparesis is present the stomach is unable to contract normally, and therefore cannot crush food nor propel food into the small intestine properly. Normal digestion may not occur. Jessica's gastroenterologist believes this has been caused by her liver disease and thinks it is possible this will fix its self after she receives a liver transplant. She has been put on a second antibiotic that she takes 3 times a day, to try to get her stomach to contract. If this medication doesn't work, we have the option of trying another medicine before other measures might be discussed. As of now, Jessica is stable and doing well.
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