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Eradicating Handicap

Tony Booth
Professor of Inclusive and International Education
Source: Booth (1982) Eradicating Handicap
Special Needs in Education, Course E241, Unit 14
Milton Keynes, Open University
  Reprinted with the permission of the author & the editor Chris Gravell
Copyright © 1982 The Open University

    In the course of her short life, Alexandra has been through more legal processes than most people face in a lifetime. At the age of just 20 days, she has changed guardians four times because of fiercely contested court decisions. Each time her life has been at stake.

    The argument which her case has highlighted has always been an emotive one: should a baby born handicapped be allowed to die, or must its life be preserved at all costs ? What the Alexandra affair has shown, however, is that this issue, once decided privately between parents and doctors, is now a matter for outside intervention.

    The battle over Alexandra's life began on July 28, the day she was born at Queen Charlotte's Hospital, London.

    Day one Dr Robert Dinwiddie, the paediatric consultant in charge, informed Alexandra's parents that their baby was doubly handicapped: not only did she suffer from a blockage in the duodenum which, without an operation, meant she would soon die; but she was also a victim of Down's Syndrome, that is, she was a mongol. Pre-natal tests had failed to detect any genetical defect.

    The parents refused consent for the operation that would save the baby's life.

    Day two Dr Dinwiddie, plainly concerned about the decision, called in the social worker at the hospital for consultation.

    Day three In a series of meetings with the doctor and social workers continuing into the following day, the parents remained adamant that they did not want their baby to have the operation. The assistant director of social services, Richard Jeffries, and his team from the Hammersmith local council referred the decision to their director, 36-year-old David Plank. Their unanimous advice was that the baby's life must be preserved.

    Day four Hammersmith made Alexandra a ward of court, removing legal rights from her parents. 'It was a painful decision', said Plank. 'But I had no doubts and no regrets'. Within hours, he signed the consent order for the operation.

    Day five Alexandra was transferred to Great Ormond Street Hospital for Sick Children, but the operation did not take place. The doctors there refused to carry out the operation against the parents' wishes.

    Day eight David Plank learnt of the decision at Great Ormond Street and decided to act.

    Day nine Hammersmith applied to the High Court for a judge to authorize the operation. Mr Justice Ewbank deferred full judgement on the baby's legal position for a further hearing in open court two days later.

    Day eleven Ewbank, having heard representations from the parents, rescinded the wardship order, and Alexandra was back in the hands of her parents. The same afternoon, Hammersmith appealed against the morning's judgement and won. The wardship was reinstated and Alexandra was under the legal control of Hammersmith again. Meanwhile, Dr Dinwiddie informed the appeal court that he had found a colleague from Hammersmith Hospital willing to perform the operation.

    Day twelve Alexandra, now back in Queen Charlotte's Hospital pending the court's decision, was moved to Hammersmith Hospital where the operation took place. The hospital said that it had been a success and that the baby was 'progressing well'.
    (The Sunday Times, 16 August 1981)

  2. JOHN
    How the 69-hour life of John Pearson put a doctor in the dock
    by Oliver Gillie, medical correspondent

    A DOCTOR accused of murdering a new-born mongol baby sat in the dock last week while evidence was given by former colleagues, doctors and nurses who attended the child during its short life and who have been granted immunity from prosecution. 'I am fully responsible, no one else. I do not want to be a martyr,' he is alleged to have told police.

    John Pearson-the baby Dr Leonard Arthur is accused of murdering-died of broncho-pneumonia, an infection of the lung. The jury of six men and six women at Leicester Crown Court has to decide whether the broncho-pneumonia was brought on by a drug prescribed by the doctor or whether the baby would have got the lung infection anyway.

    Arthur, 55, of Church Broughton, near Derby, has pleaded not guilty to the murder of the child, who lived for only 69 hours at Derby City Hospital. Police began investigations after they received information from Life, a pressure group opposed to abortion and euthanasia.

    The evidence of two doctors and six nurses has outlined the events which occurred in the short life of John Pearson, who was denied food while in their care.

    The baby was born on Saturday, June 28, last year at 7.55 am. He was slightly blue but soon became pink after oxygen was given. His heart, breathing, muscles and reflexes were all strong. He weighed a good 7 lb. Dr Robert McInnes, the paediatric house officer, noted shortly after the birth that the child had the mongol face and the single 'simian' crease in the palm of the hand characteristic of Down's Syndrome (mongolism).

    Mongols often suffer from defects of heart or bowel that are not immediately apparent, the court heard. People with Down's Syndrome are seriously subnormal in intelligence and seldom able to live an independent life.

    The mother, Molly Pearson, 31, was told of the mongol diagnosis by the obstetric house officer, Dr Thomas Fryatt, at about 9 am. A midwife held the baby beside her bed but she turned away and wept, saying: 'I don't want it.' She was more definite than most mothers in such a situation.

    Dr Arthur confirmed the diagnosis at about 11.30 am and spoke to the parents. He then wrote in the notes: 'Parents do not wish it to survive. Nursing care only.'

    Douglas Draycott QC, prosecuting, asked McInnes what this instruction meant. It meant that the baby should not be fed. Asked if there was any question of striving to keep the child alive, McInnes answered: 'At that point, no.'

    Dr Fryatt said that he understood the instruction 'nursing care only' to mean keeping the baby warm, changing it, and comforting it. Asked why the word 'only' was used he said that it means if any other illness arises, such as broncho-pneumonia in this case, then it does not necessarily have to be treated. A midwifery sister with 11 years' experience, Kathleen Simpcox, who attended the baby, said she knew of no severely malformed child who survived after this instruction had been given at the hospital.

    Dr Arthur prescribed the drug DF118 (dihydrocodeine) to be given to the baby every four hours. The drug is related to morphine but is not so strong. The baby had its first dose of the drug at about 2 pm on Saturday. At about 2.15 pm it was noticed to be going grey. The child became increasingly ill. That evening or the following Dr McInnes visited the ward and was told of the baby's condition but did not examine him.

    By Sunday evening the baby was critically ill and considered near to death. The hospital chaplain was called and in the absence of the parents christened him John.

    To Sister Cecelia Mahon the following evening the baby looked very poorly and distressed. His stomach and bladder were distended and not working properly. He was throwing back his arms in an attempt to get breath. Sister Mahon was asked by prosecuting counsel what she would normally do on seeing a baby in this condition. She said she would telephone the doctor but because of the 'nursing only' instruction did not do so.

    However, Nurse Margaret Slater obtained permission from the house doctor to give more drug and water through a stomach tube. The baby was given a full dose of five milligrams. Nurse Slater noticed that he then cried less and his breathing became easier.

    A few hours later, at 5.10 am on the Tuesday morning, John Pearson died in Nurse Slater's arms. She blinked back tears as she told the court. Earlier Nurse Slater, who has two children of her own, one handicapped, had said that her job was to nurse the baby as she would her own child.

    The court heard from two doctors in charge of the child that if antibiotics and oxygen had been given, as they would have been to a normal baby, then its life might have been saved.
    (The Sunday Times, 18 October 1981)

    [The judge had]
    ... indicated that it was lawful to treat a baby with a sedating drug and offer no further care by way of food or drugs or surgery, provided ... first, that the child must be 'irreversibly disabled' and second, 'rejected by its parents' ... The judge drew a distinction between (a) sedating the baby and then passively letting it die-'allowing nature to take its course'; and (b) doing a positive act to kill the baby-for example, giving it a death-dealing dose of drugs. The latter he said would be unlawful; the former lawful.
    [But the ruling about baby Alexandra was in conflict with the outcome of the Arthur trial]

    In that case the baby girl was more severely disabled than the boy in the Arthur case. Besides being a Down's Syndrome child, she needed life-saving surgery. The parents indicated they did not want her to live, and doctors decided not to operate. The guidance of the courts was sought, and the Court of Appeal authorised the necessary surgery, despite the parents' wishes. The Times of 10 August said: 'It must almost inevitably be right for the court to come down on the side of life.' And in the Court of Appeal, Lord Justice Templeman stated: 'It was wrong that the child's life should be terminated because, in addition to being a mongol, she had another disability.'
    [The BBC] sent out 600 questionnaires to British consultant paediatricians and paediatric surgeons. Dr Arthur himself is a senior consultant paediatrician. By 7 November, they had received 340 replies, of which 280 were fully completed.

    What the doctors said
    One of the questions was, 'A Down's Syndrome baby, otherwise healthy, requires only normal care to survive: Would you give it such care?' Two columns were provided for responses: one on the assumption that the parents wanted the child; the other that the parents rejected the child. Some 90 per cent of the doctors who responded on the basis of rejection by the parents, said that they would give normal care.

    Those who said they would not do so were invited to choose between four options: (a) to feed and care for it but not give it active medical treatment if it contracted a potentially fatal illness; (b) to give it drugs so that it was unlikely to demand food and would eventually die; (c) to give it a quick and painless death; (d) don't know. All of these respondents (8 per cent of the total, allowing for don't-knows) opted for option (a). None of them opted for (b).

    In the Arthur case, the child was an uncomplicated Down's Syndrome baby. Evidence appeared after postmortem that there was some damage to the child's heart, lungs and brain. But there is no evidence that this was known at the time Dr Arthur made his decision. Nor is it clear that the extent of the damage was incompatible with the baby's survival, all things being equal.

    Dr Arthur chose sedation and nursing care only-i.e., option (b) of those listed [above]. But not one of the doctors in the poll would have done what he did.

    So even if doctors were the arbiters of medical ethics-which I am convinced they are not-none of them in the sample regarded what was done as appropriate.

Revised: December 28, 2000.