Ian and Kristine Stacey are wearing the sallow, strung-out but consummately grateful expressions of parents who know what it is to see a dying child saved. A few yards away in an intensive-care cot, amid a jumble of tubes and pipes, lies their baby son, Tom, his skin a wan yellow and down the middle of his chest a vivid claret scar. Tom was born healthy but a virus, probably from a cold his mother caught in the last two weeks of pregnancy, attacked his heart causing irreversible damage. A transplant was his one shot at survival.

Several days ago, at less than five weeks old, he had a heart transplant operation when only hours from certain death — at the last minute, a donor heart, the size of a small strawberry, was offered from another baby, equally tiny but less fortunate. Tom is the youngest boy to have had such an operation at the Great Ormond Street Hospital (GOSH), in London.

As transplantation has become more common it’s possible that we have become blasé about the work and dedication that goes into every operation. But now, just a few weeks later, watching a now chubby-legged and smiling Tom getting the all-clear to go home to Essex with his family, it seems little short of a miracle. Organ transplant is one of the greatest achievements of modern medicine and the team at GOSH has performed more than 400 thoracic transplants (hearts and lungs) on children and babies in the past two decades — about 20 a year — making this the world’s largest centre for paediatric transplants.

The first time I met Kristine and Ian, both primary school teachers, they were exhausted with worry (they spent weeks living in the hospital’s family quarters). Like many people, the Staceys were always pro-organ donation, but also like many people they didn’t think about it much. “Prior to this, I’d like to think that if we’d been in the same position, we’d have done the same . . . but when you are talking about a child it’s such a hard thing to ask,” Kristine says. “I can’t imagine the process that those parents went through. But we would definitely do the same now. There’s no doubt in my mind. We are so thankful.”

Organ transplant, particularly on children, is obviously an emotive topic. It has grown more so in recent months with the story of 13-year-old Hannah Jones, who declined a heart transplant declaring that she had “had enough” of hospitals and preferred to enjoy what time she had left at home in Hereford with her family. There has also been the national debate over whether there should be “presumed consent” of organ donation, dispensing with the need to carry donor cards, and controversy early this year over the news that some donated organs were being transplanted into foreign patients, prompting a media cry for “British organs for British patients”. Regarding that latter point, here’s food for thought. The baby’s heart that saved Tom came from a foreign country. It was flown in from Europe and if it hadn’t been Tom would have died. In Britain doctors are not allowed to take organs from babies under two months because the code of practice of the Academy of Medical Royal Colleges advises that brain-stem death (the brain stem is the stalk of the brain that connects its bulk — the cerebral hemispheres and mid-brain — to the spinal cord) cannot reliably be diagnosed in babies so young. Other countries, including the US, have different criteria. Mike Burch, paediatric cardiologist and director of cardiothoracic transplantation at Great Ormond Street, says that in the past six years he and the team have retrieved 31 paediatric hearts from Europe. To his knowledge none has gone the other way.

This is partly because Britain has the expertise for child transplants, but also because, for young children at least, the rules work in Britain’s “favour”. What he and every other doctor in the team want to see is an increase in organ donation, ideally by 50 per cent, but they are not banging the drum for the introduction of presumed consent — where you would have to actively “opt out” of donating your organs if you object. They doubt it would ever happen in this country, anyway, for fear of alienating the public.

What they favour is the introduction of many more “transplant co-ordinators” — experienced medical staff who work delicately with the families of potential donors — as there are in countries such as Spain, where donor rates are significantly higher. The paediatric donor rate in the US is three times that of Britain.

This, along with encouraging families to discuss whether they would want to donate, they believe to be the most effective way to increase rates. At present, there are about 7,000 people waiting for a transplant in the UK while there are approximately 770 cadaver organ donors and 2,700 transplants performed each year.

We are talking in an operating theatre where Mike Burch has just performed a biopsy on a ten-year-old girl who had a heart transplant six months ago. Such procedures, which involve cutting a tiny piece from the new heart to send for testing, are necessary in the early months to check that the child’s cells are not rejecting the organ.

This child’s transplant took place at roughly the same time that Hannah Jones decided to decline one, thereby making global headlines. For most of her life, Hannah had been in and out of hospital and couldn’t face another major procedure, which she believed might have killed her. “I just decided that there were too many risks and, even if I took them, there might be a bad outcome afterwards,” she said. When her parents backed her decision, they were threatened with a court order to forcibly remove their daughter.

Hannah was admired for her courage and maturity but the publicity also caused distress for some families awaiting their children’s transplants. Burch says that, unfortunately, the story created the impression that the hospital would take a child and do a transplant against his or her will. “We would never do that. We have never transplanted a child against his or her or the family’s wishes,” he says. Though it was never the intention of Hannah’s family, he believes that it may have inadvertently exaggerated the risks of having such an operation.

This is one of the reasons why GOSH granted The Times unique access to the hospital, to report about child organ transplantation, to address some of the misconceptions and fears harboured by children and parents and to talk to the patients to find out what it is really like.

For most children, Burch says, by far their biggest fear is dying during the operation. “Many are frightened of saying goodbye to their parents and not waking up,” Burch says. Such deaths are rare. During the past 50 consecutive heart transplants here there hasn’t been one death at operation (a small number may die later from rejection of the organ). But it is equally important to realise that transplantation is never a “cure”, as many assume. The average lifespan of a new heart is 15 years (though some may last 20 to 25 years) after which another transplant is required. The duration of transplanted lungs is shorter — seven to 12 years — because often the donor has been ventilated in intensive care and infection may set in. Still, the quality of life that patients enjoy after transplant is, in most cases, excellent. Burch says that the lives of the vast majority of very sick are transformed and, with new hearts, they are able to enjoy many high-quality years.

There is also no reason why a patient should suffer pain post-transplant, as many fear, because pain-control teams measure medication meticulously. Eleanor Taylor, 10, who I meet in the wards a few weeks after her transplant, confirms as much. Though she is weak today (a blockage in her bowel has distended her stomach) she says that the operation brought no pain. “I thought I’d be all achy, but I wasn’t, I felt fine,” she says. She should have gone home several days ago but the bowel problem set her back. Recovery from transplantation can be like this — a rollercoaster ride of ups and downs.

Her father Mark, a train driver, becomes emotional when he talks of the treatment that they have received at Great Ormond Street. “I can’t fault them in any way. The treatment we have had has blown me away. They help you with every aspect of being in hospital: your accommodation, your psychological welfare, even silly things such as running out of clean clothes.”

What is his view on organ donation now? “Until you are in this world you don’t realise how important these things are. One person can help so many just by carrying a card.” Eleanor never had time to worry about the transplant because she was in an induced coma when it was carried out. Meningococcal meningitis was diagnosed two years ago, which meant her heart was damaged and she began to deteriorate. She went straight on the list and a donor was found within days. But how do children on the transplant list, who know the magnitude of the operation they are going to have, handle the idea of receiving a dead person’s organ, something that many adults would admit to feeling squeamish about? Helen Latch, a cardiothoracic nurse specialist, says that, touchingly, some younger children worry that getting a new heart will make them feel differently towards their parents, that they might not love them as much, equating the heart with affection.

Harriet Conniff is a clinical child psychologist at GOSH whose job it is to look after the psychological and emotional welfare of patients. She says that what an adult imagines is worrying a child is often very different from the truth. “My role involves helping them think things through from a different perspective, unpicking why they may be a bit quiet,” she says. “It is much more recognised now that the [health of the] mind and body are integrated.” At one assessment, a young girl said that she didn’t want to have the operation and her mother, who couldn’t find out why, was getting upset. “She told me ‘Jesus gave me this heart and I don’t think he would want me to have another heart’,” Conniff says. What do you say to a child in that situation? “I said that I thought Jesus would want her to be happy and healthy.” She went on to have the transplant.

Sometimes children worry about taking time off school (there is a hospital school on site), about the needles that will be used for their blood tests. Helen Latch says as much effort as possible is made to talk about the procedure. “We talk in terms that they’ll understand, such as, ‘Your heart’s your engine’ and ‘It’s tired so we’re going to change your engine’,” she says. “We do talk about the fact that another person is going to donate the heart or lungs.”

Doesn’t the idea concern them? Latch says some are too young to fully understand, but for the older children, who know how to use the web, she says that what they have read there is often worse than the reality.

Faye Langdale, 16, who had a heart transplant three years ago, suffered from dilated cardiomyopathy, and could barely walk up the stairs. She was 13 and her heart couldn’t pump the blood around her body properly. “I remember the psychologist saying ‘How do you feel about a transplant?’ and I said, ‘Well I don’t have a choice’. It’s not something I agonised about.” She was on the list for just five days when a heart became available. Because she was 13 she was able to take a wider range of organs (hearts are matched weight for weight while lungs, which can sometimes be “cut to size”, are matched on height). “I didn’t have any pain at all,” she says. “I’d say to anyone who needs a transplant — do it. You’re going to be scared but it isn’t as bad as you think.”

So what about you? Do you support organ donation? Do you carry a card? However much one might applaud the miracle of transplantation it is still something most of us recoil from thinking about. Some people have specific fears. Are brain-stem death tests accurate? How can we know for certain that the patient cannot feel pain? A friend to whom I spoke recently favours organ donation but has a niggling doubt “that if you say ‘yes’ the doctors just give up trying to save your loved one’s life. They’re written off because they want the organs”.

Of course, doctors vehemently deny this. Their Code of Practice for the Diagnosis and Confirmation of Death states that “a definition of human death should not be related to organ transplantation”. It acknowledges that there are “those who argue that the diagnosis of irreversible cessation of brain-stem function as a criterion for the diagnosis of death itself is irretrievably wedded to the desire to acquire organs for transplantation”, but adds, “the fact is that there is no logical relationship between them”. Yet as long as there are people harbouring these fears isn’t the answer to increasing donation rates to have a more open debate about the issues? The layman finds the concept of “brain-stem death” difficult to accept anyway — if the person is warm and still breathing surely he or she is alive? Even if they accept that their loved ones won’t recover they might not be so certain they can’t feel, hence some relatives asking for patients to be anaesthetised before organ retrieval.

The Code of Practice acknowledges that there may be residual reflex movement of the limbs after diagnosis of death but states: “As this movement is independent of the brain and is controlled through the spinal cord, it is neither indicative of the ability to feel, be aware of, or to respond to, any stimulus, nor to sustain respiration or allow other bodily functions to continue.”

Dr Joe Brierley, consultant intensivist at GOSH, has the unenviable job of approaching the parents of children who are brain-stem dead and asking them to consider organ donation. He is a sensitive, sympathetic man who agrees that, yes, these issues should be out in the open and people deserve to be able to ask anything that they like.

Does he agree that a donor should be anaesthetised before organ retrieval if it gives the family peace of mind? He says that he can understand such fears and usually, after discussion, appropriate steps requested by the family can be met. Nor would he judge any family who decided not to agree to donation. “I have got children. I can understand. The situation they are in is just terrible,” he says.

How does he go about approaching a family? “Often you have had to talk about dreadful things with the families in the days before,” he says. “But you gently introduce the idea and let it settle. I am not allowed to persuade. We always stress it is completely up to them.” Sometimes Brierley is told “no — go away” but not as often as you might think. “Mostly parents are very generous; about two thirds agree. I had one situation where the father [of a 12-year-old boy] said ‘I don’t want to talk about it’ but then an aunty said ‘I remember him saying he wanted to be a donor’ and they ended up saying ‘yes’.” Sometimes relatives will agree to consent on condition that the organs are guaranteed to go to a child, but this isn’t allowed under UK rules.

Brierley says that simply having the discussion as a family makes it so much easier to decide if the terrible time ever does come. Studies show that families who consent to donation ultimately cope with their grief better.

Carin Van Doorn, a heart transplant surgeon at GOSH for six years, agrees that there should be more open discussion about donation. “People should be able to say, ‘This is what I’m afraid of — how can you reassure me?” she says. “It’s very disappointing that the donor rate is so low but I don’t think assumed consent would necessarily improve that . . . it might breed mistrust of the medical profession. I think that the best thing is for people to make a decision, act and register. I don’t believe in the nanny state.”

She says that there is also a misconception about how patients accepted as donors are treated. “A lot of people feel that if they consent to donate [the patient] won’t get any extra treatment. They are looked after very well.”

Two sets of tests are done to establish brain-stem death. They are conducted by two doctors from different teams, one of whom must be a consultant. The doctors test for motor responses to pain and for cranial nerve (brain-stem nerve) reflexes including the papillary light reflex, the gag reflex and reflex response to bronchial stimulation. But the reality is that advances in paramedic and neurosurgical intensive care together with the wearing of cycle helmets and seatbelts mean that very few children are determined as brain-stem dead in this way — possibly as few as three or four children a year, even in the largest units.

And here is another surprising fact: being a heart transplant surgeon is not as popular a career option as it once was. Twenty years ago most medical students wanted to be one, but now they don’t see it in quite the same way. The hours can be gruelling and not conducive to family life. Operations tend to take place throughout the night because they take many hours to complete and hospitals need their operating theatres for other surgery during the day.

Van Doorn says: “You can get a call at 7pm on a Friday saying that there’s a potential donor then you might be starting in the operating theatre by 2am. Some operations last eight hours. But you just get on with it. It’s a privilege.” She adds that doctors feel a huge responsibility to both patient and donor. “These kids are exceedingly brave.”

She respects a patient’s right to refuse an operation, as Hannah Jones did. “Sometimes. I think it’s a very respectable decision. It enables you to move on to a different type of treatment, move to a gradual process of saying goodbye, which is important too.”

But for now the blooming health of those who didn’t have to say goodbye, who benefited from the generosity of others, is its own advert for the marvel that is organ transplantation. Ask the parents of Sarah Cox, now 2, who, after having the operation at 23 days old, is Britain’s youngest surviving heart transplant patient. Like Tom’s heart, her new one also came from continental Europe.

“We are totally indebted to that family,” says her mother Jennie. “Sarah is brilliant, just amazing, a little character. It is hard to think we wouldn’t have had any of this. We know the problems that may arise in the future; we are prepared for that. But [transplants] give people extra, precious time.”

Like Sarah, Kristine and Ian are now enjoying the immense luxury of having their baby son at home with their elder daughter. Kristine sounds jubilant — a different person to the petrified, drained mother I first saw all those weeks ago. “Tom has learnt how to bottle feed now, he can roll over and hold his head up and he’s really interested and alert,” she says. “He is responding like a normal baby. You would never realise what he has been through.”

Both Kristine and Ian know that child organ donation is the difficult, agonising thing for anyone to think about. “We have just been so grateful,” Kristine says, “so totally, eternally grateful that someone did this for us.”

I’ve no regrets about rejecting transpant

Seven months after Hannah Jones (above) chose not to have a life-saving heart transplant, she remains convinced of her decision. She is still weak from an enlarged heart caused by the treatment for leukaemia, but shortly before Christmas she was able to make a visit to Disney World in Florida. Today, she says that she has no intention of changing her mind, but “never say never”.

Speaking from her home in Marden, near Hereford, she says: “I still feel that refusing my heart transplant was the right thing for me to have done. I don’t think refusing a life-saving operation is right for everyone, but I feel like it was the right option for me. I don’t dwell on the decision not to have the operation. To be honest, I hardly ever think about it. When I hear that other people have had successful operations I think ‘Good for them’. I wish them all the luck in the world — but it doesn’t make me want to change my mind.

“Sometimes people try to get me to change my mind but if they knew what I’ve been through, and knew how I felt, they would understand. At the end of the day it’s my decision and, for now, I’ve made it. Mum has said to me ’You can always change your mind, it’s not too late’. I don’t think I will but ‘never say never’.”

Kirsty, her mother, says: “I often think about Hannah’s decision and I often wish she would change her mind. But at the same time I appreciate that Hannah made the right decision for her at the time. Hannah can change her mind at any time and if she ever does, I’ll be bundling her in the car and taking her straight down the hospital.”
Simon de Bruxelles

To join the NHS Organ Donor Register call the Organ Donor Register line on 0845 6060400, or log onto the website: www.organdonation.nhs.uk or text the word GIVE to 84118. Standard text rates apply.

Great Ormond Street Children’s Charity needs to raise £50 million every year. For more information or to donate visit
www.gosh.org or call 020-7239 3000