The father of an 18-month-old boy at the centre of a right-to-life case told the high court yesterday that it was for God to decide when his son should die.
The parents of the child, who is known for legal reasons as MB, are fighting a hospital trust which wants to withdraw ventilation from their son, who has been in a high dependency unit or intensive care since he was seven weeks old.
The boy has spinal muscular atrophy, an incurable and progressively worsening condition leading to complete paralysis. He cannot breathe for himself, cannot chew or swallow, is fed through a tube and - although not thought to be impaired mentally - can move only his eyebrows, feet, and his fingers very slightly.
One of the doctors treating MB has told the judge, Mr Justice Holman, that he believes the child has an "intolerable life". But the boy's Muslim parents argue that he has a reasonable quality of life because they believe he can recognise and respond to them, and react to television and music.
MB's mother said she believed he showed pleasure by moving his eyebrows up and trying to smile. She said he enjoyed TV and could focus his attention on favourite DVDs, such as Barney, Shrek and Finding Nemo. "If he likes the programme, he'll focus on it. If he doesn't, he'll focus away or go to sleep."
The parents want him to be given a tracheostomy, which would make long-term ventilation easier, so they could take him home or at least allow him to be taken for walks around the hospital's gardens.
Questioned by the couple's counsel, Charles Foster, the father said: "I think MB is all there, with most of his feeling, enjoying the company, so I don't think it's right for anyone to decide he should die or not. As a Muslim I believe that no one knows exactly when people will die.
"It was God who gave us life and God will take it whatever the situation, good condition, sad, or whatever your condition. You've got a certain time to die - that's what I believe. We do our best and leave the decision to God."
Huw Lloyd, for the hospital trust, said: "You take the view that God gives life and God takes it away and it's not for anyone else to interfere with the natural process of dying. Were it not for modern technology and ventilatory support, your son would not be alive today."
The father answered: "I accept that, but as I said before, we do our best. When his time is coming it will come - if he is in good condition or not. We do our best, so each one do his best and let God decide."
During questioning by Caroline Harry Thomas, counsel representing the child's interests, MB's mother said that she had seen a number of recent improvements in her son's condition.
"Since the age of seven weeks he has never moved his feet, but all of a sudden he's moving them now," she said. "Also, he did lose all mouth control, but he is starting to move it now." She said that he had started to move his bottom lip "up and down" when she cleaned his teeth.
Asked if she believed that there might be a cure available for him, the mother said: "Probably in years to come."
It is believed to be the first time a court has been asked to make such a ruling on a patient who is sentient and not in a persistent vegetative state. The hearing continues today, when counsel are expected to make their closing submissions.
