Robert Blades had two liver transplants in 1989 when he was a child and is now the longest surviving child to have had operations in that field – it’s a chance he hasn’t failed to grasp
13:30, 29 Aug 2026Updated 13:39, 29 Aug 2026
Robert Blades, longest surviving child liver transplant patient, with wife Emma
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.
Robert Blades in hospital for liver transplant as a child(Image: Supplied)
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 and his parents are celebrating his extra years
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.”
For Rob, aged eight, the future seemed grim(Image: Supplied)
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. We had no idea if it would work and if it did how long it would last. When they got him back from the operating theatre to ICU, we were relieved. He was in hospital for six weeks. But from early on the liver started to reject despite the use of powerful anti-rejection drugs.”
By late summer Rob was sick again. He said “The anti-rejection drugs were unpleasant. But It was my failing liver that was making me jaundiced and unwell.”
Heather added: “We were told Rob needed another transplant, but could they find another liver in time? There was still no organ donor register. So sourcing organs was a bit of a lottery.”
Rob continues to enjoy life with his family
Luckily for Rob seven months after the original transplant, in September, another liver was found. Again, the donor was a young girl killed in a car crash. The second op was a success – with medics assuming a five to ten year survival rate.
But 36 years on Rob is now happily married to wife Emma, 46, and dad to Megan,16 and Marilda, 12. He said: “At the time I wouldn’t have appreciated how lucky I was. Now I realise that in the absence of a national donor register other children would have died. Yet I got two transplants in less than a year.”
The family enjoys an outdoor life, surfing, windsurfing, sailing and climbing with their daughters – Rob even played rugby, knowing contact sports are frowned upon by medics because of the risk of damage to his transplant.
He said: “The doctors would rather you were risk adverse but there’s no point in wrapping yourself up in cotton wool.”
Rob an advocate for Liver UK – said taking medication daily reminds him how lucky he has been. One reason survival rates are now so good is the anti-rejection drug, cyclosporin, which the late Sir Roy Calne helped develop.
Rob’s mum said they weren’t told a great deal ahead of the transplant
He said “You always remember your donors. I wrote to both of mine and got a thank you back from one. While there have been few problems with liver number two, it has started to show signs of rejection which can’t be controlled. I’ve had 36 years thanks to this liver but in recent years my body has started to reject it despite my anti-rejection drugs.
“You worry that should I need a third transplant, I might not get one. After all, I’m nearly 50. But I wouldn’t have been here today without that second transplant. And for that I am eternally grateful.”