An emotional drama was enacted in the Family Division of a British High Court on Monday as a heartbroken mother asked to let her seriously disabled son die.
The mother (name withheld) is backing a hospital's application for the year-old baby to be taken off life support as it was suffering from paralysis of the lungs, reports The Mail, London.
The baby's father, however, insists he must live and says a simple operation could even lead to him being cared for at home.
Judge Justice McFarlane listened to the case as Baby RB's father and mother looked on. The couple, now separated but still on good terms, sat just yards apart in the Family Division of the High Court.
The anxious faces of the young parents - she in a cream jumper dress and leggings and he in a suit with purple tie - spoke volumes of the ordeal they were facing.
Their son, named only as Baby RB, has an extremely rare genetic condition which means almost all his muscles are useless.
Tragically, his brain is not affected, so he can hear, feel and see but is 'locked' in a helpless body. He also has to endure regular painful treatment to clear his lungs and his mother, who cannot be named, says his suffering must be ended.
She is at his bedside every day, and her solicitor Anthony Fairweather said outside the London court: 'She has seen the pain he experiences just to survive.
'In her mind, the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child.'
Last night a member of the mother's baby said she was anguished by the little boy's plight, and did not want him to suffer.
'RB's mother loves him very much. She's his voice and she only wants what is in his best interests.'
If the hospital's application is successful it would the first time a British court has, against the will of a parent, determined that life support can be withdrawn from a child who is not suffering brain damage.
Michael Mylonas, acting for the hospital trust involved, said Baby RB was one of the most severely injured children in its care, and nursing staff would give 'compelling' evidence to that effect.
He said the little boy, who should now be taking his first steps and saying his first words, cannot even smile in the normal way.
He should be allowed 'a peaceful, calm and dignified death' with palliative care to prevent suffering.
Mylonas said: '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 affect his brain function at all.
'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'.
Mylonas insisted that the application was a decision that had not been made with haste. But Justice McFarlane and the court were also told that Baby RB is able to bang a drum and paint with his hands and feet. He is also able to show pleasure when for instance being bathed, and can shed tears.
Video footage will be shown of him holding a drumstick and banging it against a drum as well as holding a piece of silver foil and crunching it up.
Medical notes to be shown to the court include comments such as 'RB enjoyed half an hour of hand and foot painting'.
Another note describes his reaction when his father arrived and started speaking to him.
It says: 'Opened his eyes, appeared to smile, wiggled arms and legs in way babies appear to do when excited.'
His parents say that although he cannot physically move his mouth to smile, they can tell he is happy by the relaxation of his tiny body and the intensity of his eyes.
The baby's plight is a result of congenital-myasthenic syndrome - a condition which affects the junction of nerves and muscles.
The court was told that he suffered breathing difficulties within minutes of his birth and was put on a ventilator.
'Very soon' he needed to be ventilated and then rushed to intensive care. Since then he has been transferred twice, but has remained dependent on a ventilator ever since.
Trials to see if he could survive without ventilation failed - the first time he breathed unaided for 40 minutes, the second for just 30.
Mylonas said the condition was 'not necessarily progressive but certainly not a condition that is likely to improve'.
Three drugs had been tried but had no effect on the baby. The latest drug trial concluded just a month ago but the court was told that 'sadly it provided no benefit at all'.
Baby RB's father, however, believes that a simple tracheostomy - an operation which creates an opening in the neck to deliver oxygen to the lungs - would allow his son to be discharged.
