Aideen McLaughlin

WHEN do you draw the line between a baby who deserves a chance to live and one that compassion dictates should die? At the age of 22 weeks, according to new guidelines set down by the Nuffield Council on Bioethics last week.

The council's report into premature babies recommends resuscitation and intensive care should not be given to infants born at 22 weeks or less, as they are unlikely to live. Given the emotive nature of the subject, the report has been met with extreme and differing opinions.

For parents of babies born at 23 and 24 weeks, it is terrifying to consider that, a week earlier, their baby might have been allowed to die. For pro-life groups, the guidelines smack of eugenics and baby euthanasia (which the guidelines reject outright). For some doctors in the field, the report recommends a blanket app roach that they feel cannot be applied in every case, but for others, it is a practical, well-researched document to be called upon when faced with the unenviable dilemma of declaring a life non-viable.

The Nuffield working group - which includes doctors, lawyers, philosophers and representatives of premature baby organisations - spent two years com piling the guidelines in response to the growing number of babies born and surviving prematurely and the variety of ways in which different clinicians dealt with the same kinds of cases.

"It is about bringing uniformity of good practice," says Professor David Archard, professor of philosophy and public policy at the University of Lancaster, who sat on the working group.

Based on the most recent statistics of premature births - the EPICure study of 1995 - the Nuffield Council makes the following recommendations.

Babies born earlier than 22 weeks should not be resuscitated, as survival before this is very rare. Babies born between 22-23 weeks (about 300 a year) should not receive intensive care unless parents request it and doctors agree, as only 1% of those born at this time survive and a high proportion do so with severe disabilities. Between 23 and 24 weeks - 11% of which survive, two-thirds with disabilities - it recommends parents should have the final say.

At 24-25 weeks, intensive care should be administered unless parents and doctors agree there is no hope of survival. At 25 weeks and above, it should be given as standard.

To put it in a wider context, in Holland no baby under 25 weeks is resuscitated, and doctors, in agreement with parents, will take active measures to end the life of a baby with severe disabilities.

Deciding this sliding scale of viability was a moral maze for the working party, Archard admits. Although as controversial as the treatment of the critically ill at the end of their lives, the beginning of life seems to bring with it more complex emotional and ethical baggage. It was, therefore, the purpose of the report, Archard says, to try to put those emotional and ethical dilemmas in a realistic framework, and to help parents and doctors make more informed decisions that would hopefully prevent recourse to complex court battles over treatment.

The high-profile legal case over the future of baby Charlotte Wyatt, born at 26 weeks weighing just 1lb, has already seen parents use the courts to force doctors to provide care against clinical advice. Now aged three, Charlotte is profoundly disabled, her parents are estranged and cannot look after her and she is in hospital awaiting foster care.

Some doctors have criticised the new guidelines, calling into question the difficulty in pinpointing the exact gestational maturity of a baby, and Archard admits that could be a problem.

"In some cases, it is possible to fix it very precisely, perhaps not so in others," he says. But he refutes accusations that this is a "tick-the-box approach" to premature baby care, and says the guidelines state very clearly that decisions should be made solely on clinical judgements and in the baby's best interests.

"These are guidelines. They are intended to be broadly helpful to clinicians and parents saying it would nearly always be the case that if a baby is born under 22 weeks, they would not make efforts to resuscitate that baby," he says.

Although Archard admitted the working party was aware that, in the background, doctors might be aware of limited resources and financial considerations, the guidelines were clear that these should in no way influence the decision on whether to resuscitate.

"The clinician should only address the clinical issues, not the broader financial issues," he says.

So what will the guidelines mean to the parents of a premature child making tortured decisions while their baby fights for life? According to Andy Cole, chief executive of premature baby charity Bliss, they are helpful, to some extent.

Cole and his partner had premature twin boys born last summer at 25 weeks. Both were resuscitated and did well, for a time. After one caught a nasty infection, he deteriorated and the parents made the excruciating decision to withdraw care. He died, while his brother is now thriving.

"It will never be an easy decision," Cole says. "But what the guidance will help with is focusing parents' thoughts. It will mean the right information is there for them to inform their judgement, for you don't plan for a premature baby."

But Shona Wood from Oban, who has two children born prematurely, said: "No doctor, even the best in the world, can predict the outcome. You're given the worst-case scenarios - there is every chance your baby will be blind, deaf, disabled mentally and physically. But unless doctors can accurately predict that, they need to leave the decision with the parents. It's the parents who have to live with it for the rest of their lives."

However, Dr Andrew Lyon, consultant neonatologist at Edinburgh Royal Infirmary, working in the frontline of saving premature babies, disagrees. All three of the 23-week babies he saw last year died, and at 22 weeks, Lyon firmly believes it is unethical to administer intensive care.

"Twenty-two weeks seems to be the natural cut-off point with our current methods of care. Below this, treatment is futile, and it is unkind and unethical to embark on treatment you know will be futile. No matter how hard we strive, we are not winning with those babies, and to embark on what is, for the family and the baby, a very traumatic time, I'm not sure we are justified."

Lyon is also saddened by the reaction of extremist groups who will read the guidelines and brand doctors who back them uncaring, or even baby-killers.

"It's because we care that we make these decisions," he says.

Lynseyann Nicol, a mother from Irvine, is not so convinced by the ethics. "This 22-week cut-off shouldn't be set in stone. I think it's down to individual doctors and parents. I know babies born at 23 and 24 weeks who have relatively few problems."

When Nicol went into labour at 24 weeks, hospital staff advised her that the chances of her baby making it out of the labour ward were slim, but nevertheless, if the infant was well enough to be ventilated, they would do so. Elissa was born soon after, weighing 1lb 11oz and the size of her father's hand. She went straight on to a ventilator, no questions asked.

Cooing placidly, Elissa is now a contended 15-month-old. She weighs only 20lbs and looks younger than her age, but she is happy. Elissa has cortical blindness (her eyes are healthy, but her brain doesn't process the messages to the eye) and cerebral palsy, and she may never walk or talk . Although she is prone to infections and in and out of hospital quite regularly, her parents unequivocally say they wouldn't have done anything differently. To anyone who doubts the quality of Elissa's life or believes money could be better spent on other areas of the NHS rather than on supporting a disabled child, Nicol challenges them to live a day with her daughter. "They'd see she is a happy little soul," she says.

Some disabled rights campaigners - like Dr Jane Campbell, convener of anti-euthanasia group Not Dead Yet, who challenged the report at its launch last week - have rejected the guidelines, seeing them as a recommendation of letting life expire on the grounds of disability.

Adam Gaines, director of Disability Rights Campaign Scotland, cautioned: "We must always guard against stereotypical assumptions about disabled people's quality of life."

The pro-life Society For The Protection Of The Unborn Child (SPUC) backed the disability campaigners. A spokesman said: "It is nothing short of eugenics to suggest because a baby has or will have a disability, or because the chance of survival is low, treatment should be denied."

The Church of Scotland raises another concern: with improvements in medical technology, increasing numbers of children are being born with disabilities, but not necessarily the resources and care to support them beyond the neonatal unit.

Dr Sinclair Scott, a member of the Church of Scotland Church and Society Council, and a retired GP, says: "Society has a duty to provide love and support for families in this situation."

Nicol says her family have so far received good support from a health visitor, but as Elissa gets older she is not sure what future help will be.

The Catholic Church's response to the guidelines is rather more surprising. Unlike the pro-lifers, they broadly welcome their core ethics. Simon Dames, spokesman of the Catholic Church in Scotland, says: "If a 22-week-old baby disabled or not is going through suffering and any treatment will be intrusive in the extreme, then it should be allowed to die. There is no compulsion to keep it alive against all odds. It's not just about a love of life for the sake of a love of life."

Dames also raises questions around the implications of the report for the abortion debate. "It throws up the contradiction that on one floor of a hospital you could be giving birth to a 23-week-old baby, whereas on another, killing a 24-week-old baby," he says. With the House of Lords recently rejecting a bid to lower the abortion limit from 24 to 21 weeks, it remains to be seen whether this report will have any effect.

Ten or 20 years ago, babies had no chance of survival at the gestation times discussed in the guidelines, so for that reason alone, the recommendations will have to be routinely reassessed and updated in line with medical advances.

Professor Margaret Brazier, chairman of the Nuffield Council working party, said at the report's launch that she would be delighted if in five years' time they were in a position to be doing just that because technology had made possible what is now not. While this raises hope for very premature births in the future, the parents of babies being born early at present have no such reassurances.