Court throws lifeline to seriously ill baby

Jul 21 2007

A seriously ill baby girl has been given a lifeline by a high court in Britain.

The six-month old child suffers from haemophagocytic lymphohistiocytosis, a genetic defect of the immune system that affects 1 in 50,000 live births and without a bone marrow transplant is not expected to live for more than a year.

The bone marrow transplant which would give her a 50% chance of life, has been refused by her parents.

The defect has the effect that a viral infection triggers an abnormal and massive over production of the body's scavenger cells which invade, and eat into vital organs such as the liver, bone marrow and brain.

The case was brought before the court by the hospital, a world centre for bone marrow transplants which has been treating the baby.

The judge in the case Justice James Holman has given the go-ahead for doctors to carry out a bone marrow transplant against the wishes of the deeply-religious couple, who believe 'God has the ability to heal her.'

Justice Holman says the child was "a living human being ... to whom, despite her disease, modern medicine and science may be able to give a full life".

The child's parents say they have already seen the baby experience painful treatments and wanted to spare her more suffering and let her enjoy her remaining months of life.

Mr Justice James Holman says he made the decision on the basis of medical knowledge and experience, the evidence, and reason, and by definition, a miracle defies medical science and all known experience and reason.

The baby apparently appeared completely healthy when she was born last December but three months later became seriously ill and DNA tests confirmed she was suffering from haemophagocytic lymphohistiocytosis (HLH).

When the condition first became active the baby initially responded to very strong life-saving drug treatment which caused distressing side effects; the disease is currently inactive.

It could become active again at any time and the opportunity for a bone marrow transplant, which provides the only chance of a cure, would have passed.

The judge said the baby girl was taking controlling drugs and living happily at home in a loving, caring and devoted family and the issues raised in the case were 'truly ones of life and death' which 'also raises profound issues of parental autonomy in our society.'

The judge also said that if the opportunity of the bone marrow transplant is not taken, a very real prospect of a full life, weighed against certain death, will have been lost for a few more months of babyhood.

The judge has emphasised that the baby's parents have the final say in whether the operation went ahead and they have promised to respect the decision and cooperate in the bone marrow transplant taking place.