When Nadia's 11-year-old daughter began gasping for breath at home a few weeks ago, she knew the child needed medical help.
But unlike most parents, she dared not take her little girl to hospital. It is not that Nadia does not love her child: quite the opposite. But her only daughter is severely disabled, and she is afraid of doctors concluding that her life is simply not worth saving.
'A few weeks ago she got very wheezy and I didn't go to the hospital,' she confesses, in her halting English. 'I gave her physio myself, 24 hours a day - I didn't want to go. I am very scared. My heart is beating when I think about it.'
Rightly or wrongly, Nadia - not her real name, which cannot be revealed for legal reasons - believes she has reason to distrust doctors.
Last year she took her daughter to the Royal London Hospital in East London suffering from a chest infection: when her breathing stopped, Nadia claims she was told it was not worth putting the child on a ventilator to support her breathing and that she should be allowed to die.
Barts and The London NHS Trust disputes the family's claims, but the matter will shortly be thrashed out in the High Court: for the story of Child N, as she is known to the judge, raises some of the most difficult ethical questions in modern medicine.
Are doctors who decline life-saving treatment to the very sick playing God - or is it more cruel to prolong suffering, for the sake of anguished relatives who cannot let go? Are disabled people really being left to die by the NHS? And how can anyone ever decide whether someone else's life is worth living?
The family's solicitor, Richard Stein, has acted both for a woman determined to die - the paralysed Miss B, who convinced judges last year she should have her life support machine switched off - and now for one determined her child should live. He argues that both cases centre on the basic human right to control one's fate.
'There have been big cases about whether to stop treatment for people in a persistent vegetative state, who are effectively not aware in any way, and the court still agonises over it,' he says.
'And yet someone in N's position, who clearly has a life - she goes to school - the idea that you can take those kind of decisions (as a doctor) is worrying.'
N's case is only the begin ning of a new ethical debate over the right to life and death, now rising fast up the political agenda.
Later this year the Government will unveil legislation for so-called 'living wills' - advance directives, effectively allowing patients to dictate that life-sustaining treatment be withheld if they become too incapacitated to make decisions.
Peers will also debate the issue of 'mercy killing' this spring, following a private member's Bill from lawyer Lord Joffe which would allow a competent adult suffering unbearably from terminal or incurable illness to receive medical help to die.
Joffe's Bill is unlikely to succeed, but a Lords committee is expected to investigate the issue.
'We have got to look much more carefully at what we really mean by autonomy - the right of people to make decisions about what happens to them,' says Dr Michael Wilks, chair of the British Medical Association's ethics committee. 'The debate is now shifting towards at least giving autonomy to people in making decisions about the manner and time of their death.'
Lying beside her mother on the sofa in their cramped housing association flat, N murmurs to herself. The little girl can speak only a few halting words of Bengali and can walk just a few steps, but her family insists that she enjoys life and responds to people around her.
'She understands everything,' says Nadia defiantly, hugging her daughter. 'She is talking her language, but I understand it and she understands me.'
Diagnosed with epilepsy, developmental delay and asthma as a baby, N first went into hospital with breathing difficulties aged six weeks. At three months, she was temporarily put on a ventilator to support her breathing.
The latest episode began on 7 October, 2002, when she was brought to the Royal London with further breathing problems. Her mother was warned it might not be possible to save her this time.
N's medical records say the family was happy for doctors to decide what should be done about resuscitation: but her mother insists that she asked for them to do what they could to save her.
N developed pneumonia, and a week later her breathing stopped. Her mother called nurses, who began resuscitation.
Nadia claims that a consultant took her into a side room and told her N was dying. Severely disabled and brain-damaged, the child was suffering and should be allowed to go peacefully. She says the doctor added that the ventilator would cost more than £1,000 a night.
'I said, "My God is helping me, my child will come back" - and the doctor just said "no",' Nadia says. 'The doctors didn't listen to me.'
Significantly, she maintains the initial conversation was carried out without an interpreter, although Nadia's English is broken; a Bengali translator was brought in later that night. When N's father and uncle arrived, the family - according to Nadia's statement - continued to insist N be put on a ventilator, while the medical team argued it would be pointless.
Eventually the doctors agreed to keep N on an adult ventilator, according to her mother's statement, for 48 hours: if she could not then breathe unassisted, the family should let her go.
The consultant's shift then finished. The replacement transferred N to Guy's hospital in central London, which ventilated her for two weeks. After three months of treatment, N finally came home: she is now back at a special school.
The Disability Rights Commission (DRC), which will make submissions on N's case, says it is far from a one-off. One of its own commissioners, the disabled social care expert Jane Campbell, complained of equally alarming treatment when hospitalised with a serious illness.
'Jane was asked, not once but twice, by two different doctors, "If any of your organs were to fail, you wouldn't want us to resuscitate you, would you?" It was put as a question expecting the answer, "No, of course I wouldn't",' says Liz Sayce, the DRC policy director. 'The reason given was that she would need to be on a ventilator. She very much wanted to live, yet the assumption was being made that somehow death would be preferable to living with a significant impairment.'
The General Medical Council is understood to be investigating a complaint from the parents of Tracey Roberts, a disabled 24-year-old who died of pneumonia in hospital, that she was not offered lifesaving treatment and had 'do not attempt resuscitation' written in her notes.
The European Court, meanwhile, is expected to rule before Easter on the case of David Glass, who was born profoundly disabled. At 11, David suffered infections after a routine operation. Doctors stopped feeding him and put him on a diamorphine drip to allow him to die peacefully.
His outraged family, however, unplugged the drip and resuscitated him themselves. His mother Carole, also represented by Stein, is seeking a legal framework to govern such cases in future.
Yet many doctors believe the law governing end-of-life decisions is vague for good reason: less flexible rules might not encompass the huge variety of patients with life-threatening conditions.
The BMA's resuscitation guidelines say that doctors may consider not reviving patients whose heart or breathing stops if they suffer 'such profound disability that they have no, or a minimal, level of awareness of their own existence and no hope of recovering awareness'. Wilks says this is one of the most difficult decisions doctors face. 'You have got to make a clinical assessment of what you are returning the patient to, and whether that life is a burden to them,' he said.
'That can be a highly subjective judgment, of course, and it can be highly paternalistic, if you allow yourself.'
He believes doctors should repeatedly discuss with seriously ill patients or their relatives whether they want to be resucitated if they suffer cardiac arrest. They should keep notes of conversations and give a clinical view on whether resuscitation would be beneficial.
'Where the doctor is under serious pressure from families or the patients themselves, there is probably - if not an ethical or clinical need to give it a go - perhaps a moral one.
'But if you have made a careful judgment that what the patient would be when they were resuscitated is somebody who is terribly burdened by a disease which we simply cannot improve, then it is not ethical to resuscitate.'
Are disabled people discriminated against by the NHS? Wilks says 'marginalised' patients could be handled better, but that doctors cannot legally be forced to treat patients against their clinical judgment.
The DRG's Sayce says, however, that disabled patients now need a commitment that their lives are not held cheap when they fall ill.
'People want to be consulted and involved, but they also want to be treated as equal citizens,' she said. 'Disabled people don't want their lives to be judged in different terms or to have a different value, that's all.'
