A British High Court judge has begun the unenviable task of deciding whether a baby boy with an active brain locked inside an immobile body should live or die.
Doctors caring for the boy, who are backed by his mother, say he will lead a “miserable, sad and pitiful existence”, even if surgery allows him to be disconnected from his hospital ventilator and returned home to one of his estranged parents.
They are asking Mr Justice McFarlane to rule that his life support should be switched off “in his best interests”.
However, his father believes that his son, who was born with a rare condition which severely restricts his ability to breath and move, could be taken off his life support if surgeons carry out a tracheostomy, which creates an opening in the neck to deliver air to the lungs.
At the start of a scheduled five-day hearing in London today, the judge was told that a fresh medical assessment is to be carried out on the possibility of a tracheostomy, the results of which would not be known until a further court sitting next week.
Martin Westgate, counsel for the father, said that if it was decided that a tracheostomy was a realistic prospect, the whole nature of the case might change.
Baby RB was born with congenital myasthenic syndrome (CMS), a rare neuromuscular condition which severely limits the ability to breathe and move limbs. He has been in hospital since birth.
Lawyers for the father argue the baby’s brain is unaffected by the condition and that he can see, hear and feel and recognise his parents.
The judge is expected to be invited to view video recordings produced by the father, showing him and his son reacting with each other, to support his case that the boy should be allowed to live.
For legal reasons, none of the parties in the court case, including the hospital trust and the medical witnesses, can be identified.
The mother’s solicitor, Anthony Fairweather, said in a statement to the media: “RB’s mother has sat by her son’s bedside every day since he was born. Every day she has seen the pain he experiences just to survive.
“In deciding to support this application, she has listened to and consulted with some of the best doctors in the world. Their view has been unanimous.
“In her mind, the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child.”
Both parents, in their 20s and said to be “amicably separated”, were in court for today’s hearing.
Opening the trust’s argument, Mr Mylonas said it was apparent within minutes of the boy’s birth on October 10 last year that he had significant difficulties in breathing.
Trials to see if he could survive without ventilation failed and he had been ventilated ever since.
In 50% of CMS cases the condition was untreatable, counsel said.
Three different drugs had been tried in RB’s case, but to no benefit.
As a result of CMS, the little boy was deprived of most of his muscle tone and could hardly move his arms and legs, although he retained some movement.
His condition was not necessarily progressive, but was “not likely to improve”, said Mr Mylonas. It was not thought to affect brain function.
The father’s argument was that brain function and cognition meant his life support should be maintained.
But Mr Mylonas said this would make the boy’s plight “unbearable”, not least because, in the future, he would be made aware of what other people were able to do.
The trust was seeking permission to withdraw fundamental life support “to allow him a peaceful, calm and dignified death”, he said.
The hearing was adjourned until tomorrow.