Mother fights father to end 'intolerable suffering' of son

The mother, in her twenties, said she was backing a hospital's plan to withdraw medical support for her one-year-old son because his "intolerable suffering" had to outweigh her grief.

The boy's father is opposing the hospital's move in a five-day hearing which opened at the High Court today.

The child, who cannot be named and is known as Baby RB, was born with congenital myasthenic syndrome, a genetic disorder suffered by about 300 people in the UK that causes muscle weakness. It has severely limited his movement and ability to breathe.

Baby RB's father says his brain is not affected so he can see, hear and feel, and recognise his parents. He said that despite never having left hospital and being dependent on a ventilator to breathe, his son enjoys being read stories and listening to music.

But the mother, who sat feet away from the baby's father in court today, spoke out through her solicitor, Anthony Fairweather. He said: "She 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.

"She has listened and consulted with some of the best doctors in the world and 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." If Mr Justice McFarlane grants the hospital's application it would be the first time a British court has ruled against a parent that life support can be withdrawn from a child who is not suffering brain damage.

The father, who has also spent long hours at his son's bedside, believes a tracheotomy would allow him to be cared for at home. The operation would create an opening in the neck to deliver oxygen to the lungs. Today his lawyers announced they had found a doctor willing to carry out the operation, although he cannot see Baby RB before the weekend.

The judge said the doctors should be re-contacted and the father's lawyers should "impress on him the urgency of the role he has to undertake". Michael Mylonas, representing the hospital's NHS trust, called for doctors to assess Baby RB tonight.

Earlier the father's solicitor, Christopher Cuddihee, said: "The father feels very strongly that Baby RB has a quality of life and demands the trust continue to provide life-sustaining treatment."

The case continues.