Liver
Liver transplants for children are necessary when their livers are severely damaged and cannot function properly. The most common reasons for liver transplants in kids include a condition called biliary atresia, where the bile ducts that carry bile from the liver become blocked or absent, causing liver damage and failure. Metabolic liver diseases, such as alpha-1 antitrypsin deficiency or Wilson's disease, can also lead to liver dysfunction due to the liver's inability to process substances correctly. Genetic conditions like progressive familial intrahepatic cholestasis or Alagille syndrome can contribute to liver failure in children. Acute liver failure can be caused by viral infections, drug reactions, or autoimmune hepatitis. Rare liver tumors or hepatoblastoma may require a liver transplant when other treatments are not effective. Pediatric liver transplants provide a chance for children to regain liver function and improve their overall health.
Resources
Helpful Resources:
This is not an exhaustive list. Please email us at: contact@transplantfamilies.org if you would like to add a resource to this list.
Getting a New Liver: Facts About Liver Transplants by the American Society of Transplantation
https://www.myast.org/sites/default/files/pdfs/getting_new_liver.pdf
Questions and Answers for Transplant Candidates About Liver Allocation by United Network of Organ Sharing
https://unos.org/wp-content/uploads/Brochure-104-Liver-allocation.pdf
Medications to Prevent Rejection After Liver Transplantation by Starzl Network
https://starzlnetwork.org/wp-content/uploads/2020/12/Medications-to-Prevent-Rejection.pdf
Psychosocial Aspects of Liver Transplantation for Metabolic Disorders by Starzl Network
Liver Biopsy Fast Facts by Starzl Network
https://starzlnetwork.org/wp-content/uploads/2020/12/Liver-Biopsy-Fast-Facts.pdf
Support
Biliary Atresia Research and Education (BARE): https://www.bareinc.org/
Our mission is to drive research and education for better outcomes in treatment and management within the Biliary Atresia community.
Liver Mommas and Families: https://www.livermommas.org/
Our organization is comprised of a group of parents whose children have been diagnosed with liver disease and have received a liver transplant. We understand the initial shock of diagnoses, the sudden flurry of information dispensed in the language of medical jargon, and the feeling of having your entire world turned upside-down in an instant.
Starzl Network: https://starzlnetwork.org/
Patient Family Voice Mission: The Starzl Network for Excellence in Pediatric Transplantation Patient & Family Voice serves to support and unite the global pediatric transplant community through collaboration with transplant community stakeholders to develop and implement innovative ideas to advocate and improve the lives of all pediatric pre- and post-transplant patients and their families.