Miracle in a bubble

As it celebrates its tenth anniversary, Barry Nelson discovers how it saves lives every day.

YOU could hear a pin drop when the short presentational video ended. Only minutes before, an audience of several hundred people had watched the upsetting images of a tiny baby fighting for its life within a protective "bubble" of sterile air.

They heard how the SCIDS (Severe Combined Immuno-deficiency Syndrome) unit at Newcastle General Hospital successfully saves many young lives by providing advanced treatment not available anywhere else outside London.

This includes a combination of intensive drug therapy and various forms of transplantation to help give youngsters whose own immune systems have failed the chance to fight off everyday infections which - in their case - could prove fatal.

But there was a sharp intake of breath - and not a few tears - as the final message flashed up on the screen: "Zara and Ross, two of the four children featured in this film are recovering. John and Adam died."

It was a reminder of the life and death decisions taken by the doctors and nurses who work in the unit and the high-risk nature of the illness afflicting the children, who come from all over the UK and Ireland.

Stepping up to the microphone at the Centre for Life in Newcastle, lead consultant Dr Andrew Cant told supporters of the charity which backs the SCIDS unit that their work must go on. "We have needed your help in the past, I think we are going to need your help even more in the future," he said.

The occasion was a party to celebrate the tenth anniversary of the Bubble Appeal, a charity launched by staff, families who have benefited from the unit's work, and well-wishers.

In that first decade the appeal, which is headed by TV agony aunt Denise Robertson, has raised half a million pounds, and guests arriving at the Centre for Life banqueting room for the party were greeted with large placards giving a breakdown how the money had been spent - £292,000 for medical equipment, £137,000 for research and the rest on a mixture of support for families, training for nurses, and toys and educational equipment for children

Another placard listed the money needed by the unit, on the brink of a move to larger, purpose-built accommodation in the revamped Royal Victoria Infirmary in Newcastle - £800,000, including £400,000 for research into improved treatment, £200,000 for medical equipment, £50,000 for a new Stem Cell Laboratory and the rest on support for patients and families.

Around the large hall were stands put up by organisations which have supported the Bubble Appeal, including fitness instructors from the Eldon Leisure Centre in Newcastle City Centre, who have raised £70,000; firefighters from the Tyne and Wear Fire and Rescue Service, who have raised £5,000; and Heworth Grange Comprehensive School, who not only raised £3,000 but provided excellent musical accompaniment, courtesy of a 40-piece school orchestra.

Dr Cant gave an up-beat assessment of how the unit had progressed since he moved from a similar unit at Great Ormond Street Hospital in London to take over the infant SCIDS unit in the early 1990s, following the tragic death of its founder Dr Graham Watson and his wife Jenny in a climbing accident.

"The great news is that most of the children with SCIDS that we treat here in Newcastle now survive. Their chances used to be no more than 50:50 but with the treatment we can now offer, the proportion who survive is now more than 80 per cent," said Dr Cant.

Improved treatment also means that many children have to spend less time in the sterile environment of the "bubble", an area measuring only six feet by three feet which provides a barrier against potentially fatal infections.

As a measure of the progress made, Dr Cant said that out of 22 children and babies who required bone marrow transplants - or some other form of transplant to stimulate their own immune system - 21 children were able to leave the unit and go home to recover.

"In those ten years since the appeal started, we are now able to treat more and more children who we would not have been able to treat a few years ago and what's more, they are staying in hospital for less time. We don't have farewell parties for them now because there are simply too many of them," he says, delightedly.

Bone marrow transplants remain the main treatment for children with severe immuno-deficiency disease but the Newcastle unit has become the only centre in Britain to carry out successful bone marrow transplants using material which is only half-matched with the patient's own tissue.

In the past, the best chance of a good outcome was when the bone marrow of a brother or sister could be used to help a sibling.

Dr Cant's team have carried out several transplants involving stem cells recovered from umbilical cords. These cells have the seemingly miraculous ability to produce "normal" bone marrow when transplanted into patients who may not be a good tissue match.

"We are probably among only two or three centres in the whole of Europe which are performing cord blood transplants. Cord blood contains about a half a pint of blood which is rich in stem cells, which we can use in transplants. Normally it is just thrown away," he adds.

The specialist has jut returned from a summer school in Portugal where he has been passing on some of his experience to young immunologists from across the Europe. "Most people think that everything special in medicine happens in London. If you were a fly on the wall at some of these international meetings I attend, you would be amazed at the regard and respect in which the work here in Newcastle is held across Europe," he says.

The SCIDS unit is renowned for its work in the difficult area of transplants which use a parent's donated marrow rather than a better match from a brother or sister.

"We are now treating boys who have a rare and chronic form of genetic disease. We used to think about half of these children would not live to be 25. We have transplanted 12 children with this disorder and ten are alive and well. This is something which has been pioneered here and in Switzerland," says Dr Cant.

One of the families sitting in the audience who have experienced the tremendous highs and the desperate lows of severe immuno-deficiency treatment are the Herberts from Westwick, a tiny farming hamlet near Barnard Castle, County Durham.

The SCIDS team were unable to save seven-year-old Edward Herbert after he developed an extremely rare genetic disorder called XLP, despite receiving two bone marrow transplants from his father, Ian. Edward had to stay inside one of the eight bubbles at Ward 23 for seven months.

"Edward used my bone marrow for two transplants but they just didn't work. He spent a lot of 2000 in and out of hospital but died in the following June," his father says.

Dr Cant warned the family that their other two boys, Alex, now six and Michael, now 11, might have XLP as well. "Michael was OK but Alex was tested and it turned out that he had XLP. Dr Cant warned us that the condition could be triggered by a virus so we had to move quickly," recalls Ian.

Fortunately, tests showed that Michael was a perfect bone marrow match for his younger brother and the subsequent transplant appears to have corrected the problem.

"It seems to have worked. It is nearly two years to the day since his transplant," his grateful father says.

Despite the chequered history of the Herbert family's dealings with the SCIDS unit, they are filled with admiration for the work the doctors and nurses do.

"What they do is just unbelievable," says Ian. "It is simple as that."

For more information about the Bubble Appeal ring 0191-267 5761.