Page last updated at 17:05 GMT, Wednesday, 15 March 2006

Sick baby's family thanks judge

Baby MB cannot chew, swallow or breathe for himself

The parents of a severely disabled baby boy at the centre of a right-to-life case have thanked the judge for ruling that he should be kept alive.

They were fighting a hospital's bid to turn off the ventilator that keeps the child, known only as Baby MB, alive.

The 19-month-old boy has genetic condition spinal muscular atrophy - which leads to almost total paralysis.

The judge said he felt the child gained enough pleasure from life to outweigh the medical evidence of his condition.

No court has yet been asked to approve, against the will of parents, the withdrawal of life support
Mr Justice Holman
CPS:LINK HREF="" ID="CPS:LINK HREF="" ID="4810180" STYLE="rightarrow">Parents' view

In an exclusive BBC interview the child's mother said: "I really thank the judge for coming to that decision."

His father said Mr Justice Holman was right to rule the ventilator that keeps the baby alive should not be switched off.

During the case at the High Court in London, Baby MB's mother described how he responded to certain cartoons, such as Shrek and Finding Nemo - but did not appear to like the news or Eastenders.

But a total of 14 medics, including two independent doctors called by the parents, told the hearing his quality of life was so poor he should be allowed to die.

Doctors argued the invasive ventilation which is keeping the child alive is likely to be uncomfortable, with one saying he felt the child had an "intolerable life".

Baby MB, from the north of England, cannot breathe unaided and is almost totally paralysed. He also cannot chew or swallow.

He suffers from the most severe form of spinal muscular atrophy and has lived in a high dependency unit in hospital since he was seven weeks old.

His parents want him to have a tracheotomy ,which could make long-term ventilation easier, so he is able to leave his hospital bedroom and explore the grounds, albeit with the assistance of medical staff.

Simple pleasures

Giving his judgement, Mr Justice Holman did not dispute the medical evidence, and said Baby MB would not experience simple childhood pleasures, such as taking his first steps or the "rough and tumble" of playing with other children.

The court has agreed with the assessment of Baby MB's quality of life by those people who know him best
Family solicitor
CPS:LINK HREF="" ID="CPS:LINK HREF="" ID="4809908" STYLE="rightarrow">A medical ethicist's view

But the judge said he was not unconscious and was capable of bonding with his family.

He said Baby MB could probably see, hear and feel - taking pleasure from the eight or nine hours his family spend with him each day.

Justice Holman said: "It must be assumed that he processes all of those sights and sounds like any child of his age and gains pleasure from them."

He added: "No court has yet been asked to approve, against the will of parents, the withdrawal of life support with the inevitable and immediate death of a conscious child with sensory awareness and cognition, and no significant evidence of brain damage."

The solicitor for the family said they felt "vindicated" by the judgement.

"In the judgement, the court has agreed with the assessment of Baby MB's quality of life by those people who know him best."

He said the parents would take time to consider the detail of the judgement.

Public hearing

However, the judgement does not mean that Baby MB would be kept alive indefinitely or that doctors would have to give treatment to the baby in any situation.

The judge has said that, if Baby MB's heart stops, it will be lawful for doctors not to give him drugs or defibrillator treatment to restart it.

They would also be allowed not to give antibiotics if he develops certain serious infections.

His parents said his quality of life must be fully assessed before any such decision is made.

A court order bans the identification of the boy, his family, the hospital where he is cared for and the medics involved in his care.

But details of the case can be reported after BBC lawyers made an application for the hearing to be held in public.

In a statement, the trust caring for Baby MB said it was an extremely difficult case, and it had consulted a range of experts and organisations before going to court.

It added: "The trust will now consider the details of the ruling and how best to care for MB in the light of this decision, continuing to act in his best interest."

It will now have to decide whether it wants to challenge the High Court ruling.

Dr Vivienne Nathanson, head of ethics at the British Medical Association, said: "For doctors, the decisions are extraordinarily difficult because they have to have at the centre of their sights the child and the welfare of the child, and not putting the child through a burdensome treatment where there is no hope of any future improvement."

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