http://www.news.com.au/story/0,27574,26298059-401,00.htmlA MOTHER and father are locked in a court battle to decide whether their profoundly disabled baby should be allowed to die.
The couple, who have separated amicably, have taken their case to the Family Division of London's High Court.
The court was told Baby RB suffered breathing difficulties within minutes of birth last year as the result of rare congenital myasthenic syndrome (CMS ).
His condition affects the communication of nerves and muscles leaving him deprived of almost all muscle movement. Since birth he has only spent a maximum of 40 minutes breathing without a ventilator, The Daily Mail reports.
The little boy's brain continues to function normally. He is aware of his surroundings, he can see, hear and feel - but his muscles are so incapacitated that he can't even smile. His condition was compared to being "locked in".
The hospital and the mother want one-year-old Baby RB taken off life support, saying his brain function simply worsens his plight.
But the boy's father believes his son might be taken off his ventilator and returned home if surgeons carried out a tracheotomy, which creates an opening in the neck to deliver air to the lungs. He plans to show video footage of Baby RB to the court to support his case that his child should live.
The Sun reported a fresh medical assessment of the boy will be carried out this weekend to determine whether he would be suitable for a tracheotomy.
If the hospital is successful it would the first time that a British court has decided that life support can be withdrawn from a child who is not suffering brain damage.
The hospital's lawyer Michael Mylonas said Baby RB should be allowed "a peaceful, calm and dignified death".
"RB is different from a number of other children who have found themselves before this court in similar circumstances because CMS is not thought to effect his brain function at all," he said.
''The effect is that he has normal cognition and normal brain function.
"Witnesses for the trust will say that the fact is that cognition will simply make his own plight all the more unbearable for him.... As he gets older he will see glimpses of what others are able to do."
He said the essential regular process of "suctioning" the child's lungs, involving disconnection from the ventilator, caused pain, choking and was "akin to ones lungs simply being paralysed".
Solicitors acting for the mother said she had spent every day at her son's bedside since he was born.
"Every day she has seen the pain he experiences just to survive," Anthony Fairweather said outside court.
Mr Fairweather said she had listened to and consulted "some of the best doctors in the world".
"In her mind, the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child," he said.
Subject: Parents fight over child's right to live 
November 3rd 2009, 11:16 am
