Search: Ventilator baby
A seriously disabled one-year-old boy whose estranged parents are divided over whether he should be allowed to live or die has shown signs that he "appears to like music", the High Court has heard.
Baby RB, although "at the most severe end of the spectrum of disability" and therefore difficult to assess, had been seen to make "purposeful movements" and derive some enjoyment from being comforted and cuddled by his parents, a senior nurse matron in the boy's intensive care unit told the court.
The boy is largely immobile and unable to breathe without a ventilator, but his brain is thought to be active, expert witnesses have said.
The senior nurse, who can be identified only as Mr B, said that during the past few months nurses had reported changes in the child's behaviour in the form of more interaction with his surroundings when he was 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," said Mr B. These were signs of "purposeful behaviour".
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Mr B was a witness in the hearing of an application by the health authority caring for the baby for a court order allowing life support to be withdrawn so that, with palliative care, he can die in peace rather than continuing to live a "miserable and pitiful" existence.
The authority's court move is supported by RB's mother, who is estranged from his father but still joins him at their son's bedside on a daily basis. The father opposes the application and says his son should have the chance to live, even though chronically disabled. But he accepts that the time may come when he should be allowed to die.
Baby RB was born in October last year with what is thought to be congenital myasthenic syndrome (CMS), a rare neuromuscular condition which severely limits the ability to breathe and move limbs.
For legal reasons, none of the parties in the court case, including the hospital trust and the directly-involved medical witnesses, can be identified.
Mr B told Mr Justice McFarlane that, because of RB's lack of facial expression and physical movement, it was difficult to assess how much pain he suffered from procedures such as swine flu injections and the regular "suctioning" required to remove fluid from his airways. A tracheostomy - the creation of an opening in the neck to deliver oxygen to his lungs - would not reduce the need for suctioning, he said.
