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Parents fight in court as to whether son should live or die
The parents of a severely disabled baby faced each other in the High Court yesterday on opposite sides of a case to determine whether the boy should be allowed to die.
Doctors, supported by mother, want to withdraw life support from the year-old boy, known only as Baby RB. They say he faces a “miserable, sad and pitiable existence”. The father, who is separated from his wife, is fighting the doctors’ application.
Michael Mylonas, for the NHS trust, said that Baby RB, who cannot breathe unaided and has been on a ventilator since birth, faced a life of intolerable pain. He was born with congenital myasthenic syndrome, a neuromuscular condition from which there was no hope of recovery. The syndrome affects only about 300 people in Britain.
The mother’s solicitor said outside the High Court that each day she witnessed the pain he experienced just to survive and felt that his suffering must outweigh her own grief. However, the baby does not have brain damage and his father’s lawyers insist that he can recognise his parents and play with toys.
Mr Mylonas told Mr Justice McFarlane that being aware of his condition might make Baby RB’s plight even less bearable in the future. He said that three different drugs had failed to show any benefit and that, while Baby RB’s condition was not necessarily progressive, it was “not likely to improve”.As well as being permanently reliant on a ventilator, the boy must regularly have it disconnected to undergo “suctioning” to clear fluid from his airways. Mr Mylonas said that this was “a feeling akin to having your lungs paralysed”.
In between suctions, “there will inevitably be periods when he suffers that choking sensation without respite”, Mr Mylonas said. “A peaceable, calm and dignified death with the aid of palliative treatment” was in RB’s “best interests”, he said.
However, the boy’s father believes that a tracheostomy, a simple surgical procedure which creates an opening in the neck to deliver air to the lungs, would allow him to be cared for at home. Baby RB will be examined by a physician over the weekend to see if this is feasible.
Mr Mylonas said: “Even with a tracheostomy, the condition of RB’s life will be such that he will have a miserable, sad and pitiable existence.”
For legal reasons, none of the parties, including the hospital trust and medical witnesses, can be identified.
The mother’s solicitor, Anthony Fairweather, said in a statement outside court: “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.