He has undergone two liver transplants, chronic rejection, dangerous bleeding, and decades of treatment. The Liver UK foundation calls him, as far as it knows, the longest-living patient in the UK who received a liver transplant in childhood. ### At four weeks, he was on the brink of death Robert was born in March 1979. Health problems manifested almost immediately. At around four weeks old, the baby stopped eating properly, became lethargic, and lost strength. His mother insisted on a follow-up visit to the doctor, after which the baby was urgently hospitalized with internal bleeding. His condition was so severe that doctors feared he would not survive the night. After numerous examinations, Robert was diagnosed with alpha-1 antitrypsin deficiency—a hereditary condition that can lead to severe liver damage. His parents were given a grim prognosis: their son was unlikely to live to nine years old. Despite this, the family tried to give the boy a normal childhood. They traveled a lot, went sailing, walked, and engaged in active recreation. However, the illness constantly reminded them of its presence—one of their sailing trips had to be abruptly cut short due to another severe internal bleeding episode. ### The first liver did not take By the age of eight, Robert's condition had sharply deteriorated: jaundice appeared, his appetite nearly vanished, and he lacked energy. Due to his swollen abdomen and yellow skin, the boy was teased by his peers. At that time, the family met the renowned transplant surgeon Sir Roy Calne in Cambridge. In February 1989, the long-awaited call came: a donor organ had been found. Robert was urgently taken to the hospital, and the operation lasted about seven hours. But the first transplant did not solve the problem. After his discharge, ascites and jaundice reappeared. Seven months later, doctors informed the family that the transplanted liver was failing and another operation was necessary. In September 1989, Robert underwent a second transplant. This time it was successful. He has been living with this liver ever since. ### Rugby despite doctors' warnings After recovery, Robert decided not to let his illness define his life. He participated in competitions for organ transplant recipients, engaged in swimming, rock climbing, sailing, and surfing. Moreover, he even played rugby, although doctors strongly advised against contact sports. In his youth, Robert worked as an instructor in rock climbing, rowing, surfing, and windsurfing, and managed to work in various countries. Later, he received an education and built a career in international shipping. In 2009, he married Emma. The couple has two daughters. ### But the illness did not disappear A liver transplant does not mean complete recovery. Robert has taken immunosuppressive medications throughout his life to prevent rejection of the donor organ. In 2011, shortly after the birth of his first daughter, doctors diagnosed him with chronic rejection. Adjustments to his medication helped stabilize the situation. Later, internal bleeding began again. One of the most severe episodes occurred after dinner with friends: Robert vomited blood at night and required hospitalization. After this incident, he completely gave up alcohol. In the following years, there were new episodes of bleeding, ascites, examinations, and unexpected hospitalizations. At one point, doctors even discussed a third liver transplant. However, Robert's condition remains stable for now. ### "What you have gone through does not define you" Today, Robert continues to lead an active life. Together with his family, he goes sailing, practices surfing and windsurfing, travels, hikes, and climbs. It has been almost 37 years since his second, successful transplant. And the prognosis that he might not even live to his ninth birthday is far behind. Robert himself has articulated his life principle simply: what you have experienced changes a person, but it does not necessarily have to limit them. You cannot choose the cards you are dealt, he says, but you can decide how to play them and with whom to walk your path.
