My son had meningitis at three days. The consultant insisted on treating...
Last week the Royal College of Paediatrics issued new guidelines on when a child should be allowed to die.
Wednesday 01 October 1997
The consultant insisted on treating. There was no debate, no consultation, only a social worker detailed next day to reiterate the sanctity of life argument. Several nurses, seeing how I loved Louis, how I sat by his incubator night and day, expressed their sympathy with my view.
Louis lived. Next week he is eleven. He is slim and handsome, active and very quick and very brain-damaged. He can't talk, can't count, can't get dressed, has limited understanding, wears nappies, is unaware of dangers, needs careful supervision at all times. His hands are like a toddler's, he can't construct, can't draw, his attention span is limited to a few minutes of hand-brain co-ordination. Additionally, a resulting brain abscess developed in part of the brain responsible for sight and Louis became autistic, trapped within his own senses without a channel to the outside world.
In spite of his intellectual damage, Louis has great capacity for feelings, good and bad. I love him dearly, with a fierce protection against all the harms that can befall him. In the last few years, he and I within our relationship have broken through the autism, have found a way to communicate, to reassure each other of our feelings, to enjoy each other's company - yet the responsibility of caring for Louis is too great for me single- handed and I rely on a range of services provided by the state.
The state has taken over the role of father-provider in all families with children whose handicaps require outside agencies to be involved. Unlike the father model projected by the child support agency, actual state provision for handicapped children is a lottery. The same social worker who had urged me to accept the consultant's belief in the sanctity of life, admitted years later that there are twice the number of handicapped children as funds available to care for them and only those parents that shout loudest get the help.
That is no moral basis on which to provide care but politicians do not want to be reminded of this incompatibility. The first one I spoke to said, "Don't come here, we can't afford you," and the second one declined to address the moral issues.
It is the point of paradox where a market economy meets principles. Logically, principles dictate that each child receives a lifelong financial commitment from the state, which is personalised and valid wherever he goes in the country: a market economy would have demand and supply of services in equilibrium.
And so we muddle along with the parents and the teachers and the carers and the children only just coping most of the time. And then the quality of care depends on the individuals who provide it: on their enthusiasm, generosity, imagination, how they perceive their standing in society.
But isn't there something familiar about this laissez-faire situation? The various agencies employed in the welfare of children invoke the state as an authority, just as once God was called upon, but there is no single voice of State to validate their judgements, only value-laden angles from various professions.
These children are the kapa cocha of our society: victims sacrificed to ideals of equality, justice, the sanctity of life. But stripped of celebration, sacrificed on the quiet. There is no public celebration of the particular qualities of Louis: his intensity of focus, his innocence, his joy in making connections. There is little public acknowledgement of the qualities of tolerance, understanding, patience, imagination, that carers develop.
I don't want Louis to die now. I have been enriched to have known and loved him and to have learned so much from him. I have journeyed from a time when I still hoped not to have to go through with the burden of caring, to the present when I care in order to make him happy. Yet there are always windows of realism in maternal love, and if Louis' life hung in the balance again, and at the time it seemed right to say, "For his sake let him die", I hope that this time, I as his mother would have a major say in Louis' treatment and would be supported in my decision.
To be a mother is to love an individual more than a principle, to be aware of the myriad details that makes up an individual: and to insist on the accumulation of particularities rather than the reduction to logical ubiquity. I want to be convinced that real progress has been made towards accepting the particular, in this newly published report on the care of ill babies and circumstances in which it may be right to let them die.
For the agencies of the state are deeply paternalistic and self-serving, by definition organised so as to serve Everyman not the individual. In the past they tended to exert a pressure on those they employed so as to stamp out individuality and human values. Now there is a new generation of caring, sensitive doctors who are more attuned to the individual features of a case. They need to be supported and defended from the hardliners who sacrifice individuals to principle and the principles of the hardliners must be shown to be only a small part of the vast network of concern that surrounds a child's life.
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