Benjamin Allan Liao was born with acute liver failure on August 21st, 2014, at Mercy Health St. Mary's Hospital in Grand Rapids, Michigan. Within 20 hours of birth and after many tests and communication among Baby Benjamain's medical team, he was transferred to the Neonatal Intensive Care Unit (NICU) at C.S. Mott Children’s Hospital at the University of Michigan in Ann Arbor, MI, for further tests and specialized care.
At two weeks of age, Benjamin was officially diagnosed with Hemophagocytic Lymphohistiocytosis, or HLH, a rare immune system disorder where specialized inflammatory cells, T cells and NK cells, do not work properly and become over stimulated. Instead of destroying infected or damaged cells as they should, they begin to damage healthy tissues and organs including the liver, bone marrow, and the central nervous system.
Treatment involves medications to stop the inflammatory reaction and to suppress the immune system. Once the immune system has "cooled off" and the body recovers from the initial insult, a bone marrow (stem cell) transplant is required for cure.
HLH most commonly presents in infants before the age of one, but can present later in life. HLH is 100% fatal if not treated.
Baby Benjamin remains in the NICU and has started treatment to suppress his immune system which appears to be working. This little trooper continues to fight everyday and remains strong (especially when he has to be turned or when Daddy changes his diaper).
The next few weeks will be spent by allowing Benjamin to heal and by checking national and international bone marrow registries for a bone marrow match as a bone marrow transplant is his only cure.
For updates on Baby Benjamin's progress, please sign in to his CarePages webpage.
To learn more about HLH, see Resources.