Father in court battle to keep baby son alive

A father is fighting a hospital's attempt to withdraw the support keeping his baby son alive.

The hospital has taken its action to the High Court, supported by the child's mother.

She is separated from the father, whose lawyers are opposing the case.

If the hospital wins the case, it would be the first time a British court has ruled against the wishes of a parent whose child does not suffer brain damage.

The one-year-old, known as Baby RB, was born with congenital myasthenic syndrome (CMS), a muscle condition which severely limits limb movement and the ability to breathe independently.

He has been in hospital since birth.

Michael Mylonas, a lawyer representing the hospital, told the court the boy regularly needed suction tubes to remove secretions of liquid which pooled in his lungs and gave him a sensation of choking and paralysis.

He said: "The clinicians' view is that Baby RB is one of the most severely injured children they have come across."

"The argument before you is the fact that he has normal cognitive function and normal brain would weigh in his favour."

"But the Trust is concerned that his awareness will simply make his own plight all the more unbearable - not so much now, but as he gets older and catches glimpses of what others can do."

"The application is for the withdrawal of ventilation and to allow Baby RB a peaceful, calm and dignified death."

Anthony Fairweather, solicitor for the child's mother, said: "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 to survive."

"In deciding to support this application, she has listened 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."

Lawyers for the father argue the baby's brain is unaffected by the condition and that he can see, hear, feel and recognise his parents. He is also apparently able to play with toys.

They say a tracheostomy, where a hole is made in the neck to allow air to reach his lungs, would enable his son to leave hospital and be cared for at home.

"This is a tragic case," the father's solicitor Christopher Cuddihee told The Sunday Telegraph.

"The father feels very strongly that Baby RB has a quality of life that demands the trust should continue to provide life-sustaining treatment."

"The father clearly adores his son and hopes to demonstrate to the court that the trust's application should be rejected."

Dr David Roberts, who independently assessed the baby, told the court there was a notable change when he was in his mother's arms and being massaged by her.

But he added: "The progress he has made in one year of his life is slow and primitive. It is difficult to talk about cognitive activity when his movement is so limited."

The parties involved in the case cannot be identified for legal reasons.

Around 300 people have CMS in the UK, with varying degrees of severity.