Eleanor Barnes is director of the Family Fund, which issues grants to families with severely disabled children - and which increasingly finds itself picking up the pieces in the wake of medical success stories. Every day she sees the effects that looking after severely handicapped babies have on families on the breadline.
'A lot of our parents are cracking up, they cannot take any more. Some write to us in a suicidal state. The ethical issue - of whether a baby should be kept alive or not - is much broader than the life or death of that child. It is about a whole network of relationships involved in that child's life; the mother, father, siblings and the community. The question for doctors is not just 'Is this a viable baby?' but 'What is the community doing to support such babies?' .'
The Fund receives an average of 11 new applications on behalf of tiny babies for assistance every day. Four or five years ago, this did not happen: the babies either died or stayed in hospital. These babies' handicaps are linked to premature birth or severe congenital abnormality. They have often survived as a result of resuscitation at birth followed by technologically advanced intensive care.
The Fund, which issues grants on behalf of the Government and is administered by the Joseph Rowntree Foundation, was established in 1973, in the wake of the thalidomide crisis. Sir Keith Joseph, then Secretary of State for Social Services, was concerned that there were many families with children just as handicapped as the thalidomide cases, who had no recourse to outside funds for basic essentials such as washing machines, bedding and family holidays. An initial pounds 3m was set aside.
The Fund keeps a database on child disability. Its latest statistics show that applications on behalf of children under two account for 28 per cent of all registrations, compared with 23 per cent in 1988 and 14 per cent in the period 1973 to 1987. The Fund currently spends approximately pounds 15m a year in grants, compared with pounds 7.8m in 1988.
Mrs Barnes believes many doctors have no idea of the circumstances into which they are sending the babies. She describes a typical application to the Fund: a nine-month-old spastic quadriplegic who has fits and is blind. 'The family must have a telephone to make emergency calls, they must have a washing machine because of excessive laundry and the need to reduce infection, and they need grants towards transport costs in order to get the child out at all with all the equipment for naso-gastric feeding, oxygen and suction.'
Another typical application was from a couple on Income Support. They wanted help with the costs of visiting their baby in hospital, but the DSS has cut visiting payments. Their baby, born with a malformation of the spinal cord, could not breathe unaided and had been on ventilation for four months. Their application was prompted by hospital staff, who noticed that the couple were going without food in order to pay for the 30-mile round trip.
It is, says Mrs Barnes, a classic example of society failing to face the consequences of medical advance. 'Does the DSS say to doctors: 'Unplug the baby - we're not prepared to pay for the parents to come to visit it'? If we are going to save life at all costs, then we must be prepared to provide the real costs of keeping that child alive.'
Alice Russell, a social worker who assesses families for Family Fund grants, says that doctors underestimate the dedication that parents need in order to care for severely disabled babies and to cope with the pressures on them. Siblings suffer, and fathers often walk out.
'I visited a single parent with a tiny Down's syndrome child, premature and dreadfully handicapped. He was attached to three separate tubes; one administering oxygen, another liquid feeds, another taking waste products. That mother was coping with thousands of pounds' worth of equipment in a tiny council flat. She was totally alone. She had been sent home from hospital with the child and told he would probably not last the night. That child is now five months old.'
Mrs Barnes identifies two pressing issues: one is the responsibility of the community in the support of this growing number of families; the other is the nature of the baby's own life. In her mind, the two are connected. Many of these babies, she believes, suffer enormous pain and face a poor future.
A practising Catholic who says her faith is crucial to her work, Mrs Barnes does not hesitate to consider death as an option for some of these babies. 'I don't think doctors are nearly sensitive enough to the rights of the baby. A baby should have the right to die.'
Some senior doctors are grappling with these issues. Dr Geoff Durbin, director of the regional neonatology unit at the Birmingham Maternity Hospital, believes his unit has faced up to the dilemmas more than most. Few babies at the unit are kept on long-term respiratory support. He does not believe that death is always a poor option.
'I say: 'At this moment in time, would I wish this to be my baby?'. The purpose of offering care to immature babies is that the care provided produces a life of value to the individual, to siblings, to parents and to society. There is no purpose in doing it simply for the sake of survivors.
'If you make good decisions, clearly and simply, you carry the parents and staff through. We say to parents: 'We want your child to be able to play and communicate.' If that is not to be the case, then we don't believe it is right to carry on. Such explicit explanation is not usual. Doctors are frightened of getting it wrong; but if everything is up-front, the situation doesn't get out of control.
'If we make a decision to switch from intensive care, I don't believe that's a killing step, it's allowing a baby to die with dignity. Most parents hold their babies through it. Some live for 5, 10, 15 minutes. Some last for a few days, some go on to survive on their own. But it means that parents can cuddle their baby without all the tubes, in a way they have not been able to before.'
The unit's survival rate for babies born under one kilogram is in the top six for neonatal units in the country, 'because our standards are very high. If you are working in an environment where the morality and ethics are clear, you can deliver to a standard not complicated by fudging.'
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