The parents of a 17-month-old boy who is so disabled that he can only move his eyebrows and feet told the High Court that he had a good quality of life and should not be allowed to die.
Baby MB enjoys The Tweenies TV programme, Jungle Book songs and his Barney the Dinosaur toy, his mother and father said. They told a judge yesterday that they would not agree to doctors' requests to turn off the ventilator keeping him alive because they believe their son is improving and they want to take him home.
MB was born with spinal muscular atrophy, an incurable and degenerative genetic disease that causes wasting of the muscles and eventually leads to total paralysis and death. He was diagnosed with the most severe form of the condition at the age of seven weeks and has been in hospital ever since. He cannot eat, swallow or breathe on his own.
The boy, his parents and the hospital cannot be named. It is believed to be the first time doctors have asked for permission to withdraw ventilation from a patient who is not in a persistent vegetative state.
Doctors believe the boy is not mentally impaired and argue that his awareness of his condition coupled with his inability to communicate his distress and pain or move in any way means he has an intolerable existence.
But in the High Court yesterday his parents said that they believed their son was improving and a cure would eventually be found. His mother said: "He has improved. He has a quality of life. It is not a poor quality of life."
She said that when she put toothpaste in his mouth his bottom lip moved up and down as if he was trying to chew, and that contrary to doctors' observations he could move his mouth slightly and communicate his wishes with his eyes. She said: "People say he can't express [himself]. But he can. He likes having his family around. He shows that in his eyes and mouth." Asked how she saw the future, the young woman said she believed that if her son had surgery to have a breathing tube inserted in his windpipe he would be able to come home.
She said: "He's never seen outside since he was seven weeks old. He would like going out, going places. He would be able to do that and his quality of life would probably be better."
She smiled proudly as she told the judge of her son's three teeth and that she believed he shows with his eye movement that he preferred a red ball to a blue one.
Also giving evidence, the boy's father said that his son enjoyed visits from his brother and sister, aged five and four. "He stares at his sister's hair when she comes to visit," he said.
He told the court that his Muslim faith meant he could not agree to request to let his son die. He said: "God gives us life and God will take it."
The hearing was adjourned until today. Mr Justice Holman indicated that he would not give a judgment this week. He said: "The big question is whether MB's quality of life is so poor and the burdens are so great as to outweigh the benefits and that he should be allowed to die."Reuse content