Baby "C" can smile and recognise her mother and father. Her loving parents, who are deeply religious orthodox Jews, cannot bring themselves to face the "inevitable" future of their child, who is suffering a muscle-wasting condition.
In his judgment yesterday, Family Division President Sir Stephen Brown said: "They visit her and see a reaction which is favourable in her face towards them. They do not believe it is within their religious tenets to contemplate the possibility of indirectly shortening life, even if that is not the purpose of the course which the doctors believe to be appropriate in order to spare her further suffering."
The treatment proposed by hospital doctors, including withdrawal of artificial ventilation and non-resuscitation if she then stopped breathing, was "in the best interests of the child". He said it would also include "palliative care to ease the suffering of this little girl to allow her life to end peacefully and with dignity".
The parents had agreed that she should be taken off ventilation in a last attempt to see whether she might survive for a time, but they wanted to be assured that ventilation would be resumed if she suffered respiratory relapse - a course of action doctors could not accept.
The judge agreed with the treatment proposed by the hospital trust responsible for treating the baby, which had the support of the Royal College of Paediatrics and Child Health. However, he gave consent "with a feeling of grave solemnity ... It is a sad feature that there is, in fact, no hope for C, and what has to be considered is her best interests to prevent her from suffering, as would be inevitable is this course were not to be taken."
The fatal disease, spinal muscular atrophy type 1, had reduced Baby C's weight from 7.5 kg last March to only 5.5kg. Doctors say she is in a "no chance" situation in which life-sustaining treatment simply delayed death without significant alleviation of suffering. Indefinite ventilation would increase distress and involve a tracheotomy under anaesthetic, which might give rise to epilepsy.
The judge praised the bravery of the girl's parents who were doing their best to support their "treasured" daughter. He referred to a statement in which the mother said they had the highest regard for the doctors, but "we are still of the opinion that the course of action proposed would not be in the best interests of our child. Religion plays an important part in the life of myself and my family". A fundamental principle was that faith could not stand aside and watch a person die where their intervention could prevent that death. "In such a case, the person that stands by will subsequently be punished by God. Failing to resuscitate is equivalent to a situation such as this," she said.
The judge said that to accede to the parents' wishes would be tantamount to requiring the doctors to undertake a course of treatment which they were unwilling to do. "Their objective in their profession is to save and preserve life but ... while the sanctity of life is vitally important, it is not the paramount consideration. The paramount consideration here is the best interests of little C."
The Royal College recently published a report identifying situations when it may be right to stop active treatment, including "no chance" cases when treatment may delay death without easing suffering. The college's President Professor David Baum said: "The college upholds fundamental principles; children's welfare is paramount, doctors have a duty always to comfort, cherish and prevent pain and suffering." The British Medical Association said such cases were "quite common" and it was down to the judgement of medical professionals on what the best course of treatment should be.Reuse content