Quality | 2009.11.06
Baby RB enjoys music, nurse tells high court
• Disabled one-year-old interacts with therapists
• Judge to rule on operation and release of TV footage
A seriously disabled child at the centre of a legal battle over whether he should be allowed to die reacts to music and makes "purposeful movements", the high court in London heard today.
The one-year-old boy, known as RB for legal reasons, has a rare condition that means his mobility is severely limited and he cannot breathe without a ventilator.
The hospital treating the boy is seeking a court order allowing life support to be withdrawn and only palliative care given. His quality of life was described as "miserable and pitiful."
Mr B, a senior nurse in the intensive care unit told the court the boy was "at the most severe end of the spectrum of disability" but had made "purposeful movements" and "appears to like music".
Over the past few months he and other nurses had reported changes in the boy\'s behaviour and interaction with his surroundings when visited by play and music therapists.
"If you place a toy in his hand, he will move the toy. He certainly appears to like music. If you place a stick in his hand, he will bang the drum," he said.
The boy also appeared to derive some enjoyment from being comforted and cuddled by his parents. Because of the boy\'s lack of facial expression and movement, he said, it had been difficult to assess how much pain he suffered from procedures including suctioning, carried out every few hours to remove fluid from his airways.
The parents are estranged. While the father believes his son should be kept alive, his mother has said her son\'s intolerable suffering means he should be allowed a dignified death. The father has argued that a tracheostomy, which would allow his son to breath through an opening in his neck, would enhance his quality of life.
Baby RB was born last October and has what is thought to be congenital myasthenic syndrome (CMS), a rare neuromuscular condition. Expert witnesses have said that, although the boy is largely immobile and cannot breathe unassisted, his brain is still thought to be active.
On Monday the judge will hear assessments about the viability of a tracheostomy and whether the boy could be cared for at home. The judge will also consider arguments from the BBC and ITN who are believed to be seeking permission to broadcast recordings showing the boy with his parents and hospital staff, a move opposed by the boy\'s mother and the hospital trust.
Susan Freeborn, the mother\'s counsel, said the mother did not want her son "shown off as a spectacle to those who are not connected with these proceedings" and felt that for most of his life, he had "belonged" to the medical process and now the legal process. His intimate and private relationship with his parents was the only thing that had not been sacrificed.
For more information, please visit
http://www.guardian.co.uk/society/2009/nov/06/baby-rb-music-high-court
