When little Robbie was a history-maker

TEN years ago this week, Robbie Sheargold's mum gave him part of her liver in a one of the first living-related transplants ever carried out. KATY EDWARDS went to see how they were doing.

TEN years ago this week, Robbie Sheargold's mum gave him part of her liver in a one of the first living-related transplants ever carried out. KATY EDWARDS went to see how they were doing.

AT the Sheargold family home in Clare, young Robbie charges around as noisily and boisterously as any other 10-year-old.

There is little to tell him apart from any of his friends, but, unlike them, he carries around inside him a little piece of his mother's liver.

Her gift to him, 10 years ago this week, which saved his life, attracted attention from the world's media as it was only the second time a living-related transplant of that kind had been carried out in the UK.

Karen Sheargold and her husband Robert, an engineer, from Clare, knew there were risks involved for mother and son.

But without the operation, eight-month-old Robbie was certain to die, having been diagnosed with a serious liver condition at six weeks.

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He had been on the conventional donor list for two months, but there was a desperate shortage of organs and it was unlikely that a match would be found in time.

Karen, 36, a teacher at Tudor Primary School in Sudbury, recalled: "Time really was running out. He was very poorly and was so tiny to have to be to be ventilated for that long. He was being tube-fed and looked like a little green alien.

"Finding out his liver wasn't working was a massive shock as everything had been fine during the pregnancy."

Robbie had become progressively more jaundiced since his birth on June 18, 1993, and was eventually diagnosed with biliary artesia, a problem where the bile ducts do not function properly and cannot rid the body of toxins.

An operation to reconstruct the ducts was unsuccessful and Robbie's condition continued to deteriorate.

After six months, his tummy had become distended – a sign of an enlarged liver, spleen or ascites (fluid in the abdomen) – and five days before Christmas, 1993, Karen and Robert were told their little son's liver was failing.

Doctors warned his parents that the chances of finding a suitable liver were small and the chances of rejection were high because of his age.

It was Karen who first raised the subject of a pioneering "living-related" transplant. She had read about it and asked if there was any chance that either herself or her husband might be suitable donors.

By now, the toxins had built up in Robbie's little body to such an extent that his hair was turning pink and the whites of his eyes had gone green.

Blood tests showed that of the two, Karen would be the most compatible – and it did not take Robbie's parents long to decide what to do.

Karen said: "When they offered us the chance to do it, we snapped it up. It was a big relief. As we have half the same genetic make-up, there was less chance of rejection.

"It seemed more of a natural thing to do. We were very glad to do it. If we had had to wait, he wouldn't be here."

At the time, however, living-related transplantation was controversial. Hitherto, grafts had always been fashioned from cadaver livers and surgeons were only just beginning to attempt the same strategy with segments acquired from living donors.

"Robbie's case had to go through the Houses of Parliament," said Karen. "Some hospitals felt it wasn't right to put the life of a healthy person at risk. There had been a fatality in Germany where a mother had died."

The Sheargolds were allowed to go ahead and on February 19, 1994, after eight weeks of psychological analysis and careful physical preparations, mother and son were operated on in adjoining theatres at Kings College Hospital in Camberwell.

In a 12-hour operation, surgeons removed one third of Karen's liver – a piece two-and-a-half inches long – along with a vein from her leg and transplanted the tissue into Robbie's tiny body.

From the vein they created a new artery to plumb in the baby's liver and made him a new bile duct out of a piece of his own intestine.

Karen said: "Robbie's surgery was more tricky. We were in tandem theatres with a huge team working on us. There were Press all over the place, including a Malaysian film company. Lots of countries were interested because of the religious implications."

After the surgery, Karen and Robbie were taken to intensive care and she was given Polaroid pictures of her son so she could see his progress.

She recalled: "There were tricky moments. He gave us a scare at midnight after the operation when his clotting started to deteriorate, but from then on he was okay."

Since the liver has huge powers of regrowth, the donor's liver regenerates very fast. Up to nine-tenths of the liver can be cut away and providing the other tenth is healthy, it will grow back to its original size.

Karen made a speedy recovery and was discharged within a week, but Robbie was kept in for one more week.

But no sooner had they both returned home than they were bombarded with requests for interviews.

It was a new human experience, involving new emotions. What must the parents have been feeling, the whole world wanted to know.

"We never thought of ourselves," said Karen. "All we were wondering was whether Robbie was strong enough to pull through.

"The whole thing was much worse for my husband. I was out of it, on a ventilator. He had to deal with the whole care side. It was very, very hard for him.

"The risks for me were quite low as I was young, fit and healthy. Obviously there was an anaesthetic risk. I knew the liver would grow back again within six weeks anyway. It was very uncomfortable as they had to cut through lots of muscle, but it's absolutely fine now."

Robbie, who is now a Year Six pupil at Clare Middle School, also bounced back to full health quickly to lead a normal life.

Karen said: "He's a completely regular 10-year-old with major attitude. He does everything now – football, tennis and swimming, you name it. Life is completely normal for us. I don't think people would realise that we really aren't tied to hospital appointments."

However, Robbie will have to take anti-rejection drugs for the rest of his life and he is just beginning to understand the enormity of his mum's selfless act, all those years ago.

"He's asked why he's different and why he had to have it done," said Karen. "We've told him it's just something that happens and something which, hopefully, he will learn to accept.

"We don't make an issue of it, we just go forwards and enjoy life. We tell him it's like a car that needs a spare part, only he had to get his from his mummy. It seems quite natural, really."

Karen has also talked to Robbie about the organ shortage problem. "He now realises how lucky we were and that other children aren't so fortunate," she added.

I asked Karen what she thought of the big issues affecting modern medicine and research today, such as the controversy surrounding the cloning of human embryos to extract stem cells.

Stem cells can grow into any tissue in the body and could potentially be used in transplant operations to replace damaged tissue.

"That's a tricky one," she answered. "But I don't think you can understand how parents feel until you have been touched by something, in the way that we were.

"When you are faced with only bleak choices in a life or death situation, you grab whatever you are given. In our case, it was an honour to be given that opportunity. We were just in the right place at the right time.

"I would think any mother would have done the same."


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