Britain's longest living child liver transplant patient is loving life - 36 years after op

Robert Blades is a fit 47 year old father-of-two who lives life to the full enjoying rock climbing, swimming and surfing - he is also the longest surviving child liver transplant patient at 36 years and counting.

Four decades ago, his parents were told he had a deadly liver disease, Alpha 1 antitrypsin deficiency, that would kill him by the age of nine. He was just 18 months old.

At that time there were no liver transplants for children and a list of those willing to donate their organs at death didn’t exist. Medics first realised something was wrong when Rob, a shipping consultant, was four weeks old and suffered internal bleeding that nearly killed him.

He recalls a childhood of hospital visits , during which a large needle was pushed between his ribs to get biopsy tissue from his liver. He said: “That was painful, but necessary, and the only way of assessing how much damage was being caused to my liver. Despite everything my family made a conscious decision - we were going to live as normally as possible.”

His parents took him rock climbing in Dorset and sailing on Cornwall, but the disease was always present. Robert said: “We spent as much time outdoors as we could. My parents did as much as they could for me. There was one memorable sailing visit to the Isle of Wight when I suffered a severe internal bleed. I had to be rushed ashore and taken to St Mary's Hospital in Newport where they operated and cauterized the bleeding.”

Rob, from The Witterings, Sussex, said: “There were hospital visits, scares, and the occasional emergencies, but life carried on. Now as a parent myself, looking back, I realise how much stress my parents must have been under.

“Every bump, every fall, every illness came with an extra layer of fear for them. But as a child, I just got on with it. What I now truly appreciate is that my parents have seen me at my best and at my worst, and I would not be where I am today without their stoic support.”

By 1988, when he was eight Rob was getting weaker, he became jaundiced, struggled to eat, and had little energy. Out of the blue parents Peter and Heather received a call to go to Addenbrookes Hospital in Cambridge, a renowned liver treatment centre.

Rob recalls: “We met Sir Roy Calne, the eminent adult liver transplant surgeon and he introduced us to his transplant team. It was quite an experience for a sickly child. It was suggested, in a casual way, that a treatment might happen sometime in the future. It was that vague.”

Mum, Heather, 75, said: “When we went to Cambridge we had very little knowledge of transplants. We knew that they had been done in adults, but not, as far we knew, in children. Sir Roy was a brilliant man but a bit of an old-fashioned doctor. He didn’t say much and we left not knowing much more than we came. We were none the wiser about a transplant taking place.”

In February 1989 the Blades got a call to make their way quickly to Addenbrookes because a liver had been found for Rob. Rob’s nine hour operation was deemed a success. His donor was a 13 year old girl tragically killed in a car crash.

Heather, 75, said: “We were excited, but it was a trip into the unknown.