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Visit the charity's profileAt just 3 months old, Thomas O'Brien was suffering with chronic diarrhoea and had lost a considerable amount of weight. He was admitted to Childrens Health Ireland at Temple Street where he was diagnosed with Bylers Disease. He was then transferred to the Gastroenterology/Hepatology Team in Childrens Health Ireland (CHI) at Crumlin. where he had a drain inserted to divert the bile outside the body (a biliary drainage bag) to help control internal itch. He also had a PEG feeding tube inserted to help build up his nutrition and he remained in hospital as an inpatient for the first few months of his life.
Thomas spent the first 14 years of his life attending CHI at Crumlin sometimes 2-3 times per week for bloods and treatment. At 14, despite his parents reluctance, Thomas decided he wanted to go on the transplant list for a new liver. Then, as now, liver transplants are not carried out in Ireland on children, so he and his family had to travel to Kings College Hospital, London. There, he was assessed by the Liver team for transplant and went on the waiting list for a new liver in January 2021, hoping to eventually get a call that they had found a liver for him.......
Thomas' Mam, Helen says This is a cruel disease which destroys lives. We will forever be grateful to Dr Emer Fitzpatrick and all the wonderful Liver Nurses in CHI at Crumlin. They have given Thomas his life back and the new machines they use and need will save so many other families the many traumas that we as a family had to go through on our journey.
To read Thomas' full story, click here ....
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