As Ellie Datnow took a deep breath to blow out her four birthday candles on a mermaid cake last month, she jumped with excitement like any other child. With her pale face and white blond wispy hair, she looked angelic in her party frock. Usually dressed in jeans for running around with the family’s two large dogs and younger brother, Ellie loves swimming just as much as ballet. But Ellie, who has just started at nursery school, is not exactly like other children. The only clue is her protective parents, James and Kate, who constantly monitor if a cough or a cold is just an ordinary snuffle because Ellie underwent a pioneering heart transplant before her first birthday.

“Watching her today makes us realise how much joy she’s brought to all our lives.” says Kate. Next weekend James and Kate, along with dozens of friends, supporters and parents in similar situations, will spend two nights under canvas and two days walking the rugged Dorset coastline hoping to raise funds for a new charity they have launched to research into the effects of children’s transplants in the hope of helping not just Ellie but hundreds of children like her.

In January, 2006 eight month-old Ellie suddenly collapsed. Within 24 hours she had gone from an apparently healthy baby just starting to crawl to a desperately sick child who doctors feared might not survive the night.

The Datnows, in London from their home in Wales for a family celebration, thought she was suffering just an annoying cold and runny nose. Like many new parents they didn’t want to make a fuss. But when their beautiful first born grew floppy and turned white they took her in a taxi to St Mary’s Hospital in Paddington where it immediately became clear this was an emergency. Later that night she was rushed by ambulance to Great Ormond Street Hospital (GOSH). As soon as doctors x-rayed her chest they discovered a massively enlarged heart barely functioning.

“We were told that her only chance was a transplant, at which point our whole world nearly collapsed. Until that moment we thought she was perfect in every way. We were completely unaware she had anything wrong, let alone a serious heart complaint,” James recalled. In fact, Ellie’s heart was normal at birth as she suffered from dilated cardiomyopathy, which is often the result of a viral illness.

Ellie owes her survival in part to a mechanical heart manufactured in Germany and known as a Berlin Heart. This kept her alive until a suitable donor heart became available for a transplant, a terrifying wait.

“We have a serious shortage of paediatric organs in the UK,” explained Ellie’s consultant, Dr Mike Burch, Director of Cardiothoracic Transplantation at GOSH.
“The rate of paediatric organ donation is much lower than in other European countries or the U.S. so children here struggle to get heart transplants and have to wait a long time.” Because Ellie was so young and weighed only 8 kilos the chances of finding a suitable organ and keeping her in a healthy condition to receive it were further reduced.

The decision to move Ellie on to a Berlin Heart was a risky procedure as she was the youngest child in the UK to be attached to such a device. Only two other children had used them before at GOSH so few nurses had experience of managing the machine. Since then, nineteen children at the hospital, which performs more paediatric heart transplants than anywhere else in the world, have been helped to live on a Berlin Heart for up to nine months and today can even wander to the local playground or coffee shop while attached.

Clare MacDonald, senior staff nurse in the intensive care unit with Ellie for most of the six weeks waiting for a suitable heart to become available, including an episode when her heart stopped for four minutes, admits today: “There were moments when I definitely felt she may not make it. Ellie had very little cardiac reserve; she was so young and so sick.”

But in February Ellie underwent a twelve-hour operation to receive her new heart.
“I can remember feeling both ecstatic that a new heart had been found and bereft at losing the heart my child was born with, however battered it had become,” Kate says, tears welling up at the memory of those fraught days. “It was a terrible time. We kept going for walks around the British museum to take our mind off what was happening to her.”

From the first the Datnows knew that a transplant was life prolonging not a cure.

Although some adult patients have survived more than 20 years, the average life expectancy of a transplanted heart in a child is fifteen years. “But that’s only a statistic and everyone knows statistics can be nonsensical. Also, that’s the life expectancy of the heart, not the patient,” Kate explains. “There have been successful second transplants but these can’t be given if the health of the child has been compromised after years being immuno-suppressed. We know there is a severe shortage of donors so we must do everything to keep her healthy. One of the most likely problems facing Ellie is a narrowing of her coronary arteries restricting the blood flowing to her heart muscle.”

Recognising this, the Datnows, in conjunction with GOSH, have just set up a charity called Children’s Transplant Research, to raise money for vital research into this problem. The specific goal is to fund one research scientist for 3 years to work with clinical registrar, Dr Jacob Simmonds, who is studying the effects of Cytomegalovirus, (CMV), on transplant patients in an attempt to understand why these patients get an accelerated narrowing of the arteries. CMV is a common infection, usually harmless, which can cause severe disease in those with weakened immune systems.

The two day trek along Dorset’s Jurassic Coast is the charity’s first major fundraising event. Among those walking (who must be over 14), will be at least two other transplant patients and the hope is that as many transplant families as possible will get involved.

“The research has already shown,” says Dr Simmonds, “that for CMV to be so potent so quickly, it needs to have an immuno-compromised host. The complexity arises however because while the immune system is fighting one organism, the by-products of that could be causing other problems. Enhancing the immune system to fight CMV may lead to life-threatening rejection in these patients. We know CMV is probably having an effect on post-transplant life but we don’t have a good way to combat this disease. We’d like to see a vaccine developed.”

“Setting up the charity was a way of giving something back to the hospital which has given our daughter a chance of life,” said James. “There’s so little positive that you can do in this situation so this is something which may help not just Ellie but hundreds of other children live longer.

“But it’s definitely not cathartic. It would be a lot easier to do nothing, get on with normal life and forget about the painful hospital visits which are a constant reminder of what may lie ahead. We feel there is an enormous amount of money spent on having a transplant, and on immediate post-operative care while getting money to do important research on keeping patents alive is much harder.”

Dr Burch agreed: “The Government funds transplants but their remit is not to fund research, which relies on charities or on motivated individuals like Kate and James. For us, the hardest thing in medical research is to get things rolling. But once you have a body of research then big charities like the British Heart Foundation can come in and set up longer term funding. Having repeated transplants is not the answer. The answer is how to make the first transplant last.”

For further information go to www.gosh.org/jurassiccoast or speak to the Challenge Team on 020 7239 3164 or contact Children’s Transplant Research through jamesdatnow@hotmail.com

Anne Sebba is donating her fee for this article to www.justgiving.com/elliedatnow