More tests for right-to-life baby

Doctors want to take the one-year-old off the ventilator

A fresh medical assessment is to be carried out on a baby boy at the centre of a "right-to-life" legal dispute, a High Court judge heard on Monday.

The one-year-old, known as Baby RB for legal reasons, was born with a rare, genetic muscle condition that makes it hard for him to breathe independently.

The father is fighting a hospital's attempt - backed by the mother - to withdraw his son's life support.

The father's lawyers argue that the boy's brain is unaffected.

This means he can see, hear, interact and play, they say.

Despite having to remain in hospital and being dependent on a ventilator to breathe, he enjoys having stories read to him and listening to music, according to the lawyers.

They are submitting video footage to the court, which they say shows him playing with his toys.

'Tragic case'

The boy's father believes that his son might be taken off his ventilator and returned home from hospital if surgeons carried out a tracheostomy, which creates an opening in the neck to deliver air to the lungs.

But the hospital says that Baby RB's quality of life is so low that it would not be in his best interests to try to save him - a move supported by the baby's mother, who is separated from the father on "amicable" terms.

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

The judge heard from the boy's doctor that he could not carry out a tracheotomy assessment until Saturday.

The baby's physician said the boy was one of the sickest children he had ever treated.

The judge said the hearing, set for five days, would continue as planned and that he would also hear the doctor's assessment early next week.

Baby RB was born with congenital myasthenic syndrome and has been in hospital since birth.

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

Some who inherited the condition die soon after birth, while others can expect to live a relatively normal life with medication.

Christopher Cuddihee, a solicitor acting for the father, said: "This is a tragic case. The father feels very strongly that Baby RB has a quality of life that demands the trust should continue to provide life-sustaining treatment."

But solicitor Michael Mylonas, acting for the hospital, said the trust was seeking permission to withdraw fundamental life support "to allow him a peaceful, calm and dignified death".

"This is not a decision that clinicians have come to with any haste."

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