LifeSiteNews.com reported on March 7, 2006:
Doctors of a 17-month old baby with normal brain function are petitioning for permission to take him off the ventilator he needs to help him breath.
The child’s doctors say the severe muscular atrophy he was born with gives him an “intolerable quality of life.” Born with a genetic disorder known as spinal muscular atrophy, the child’s condition in time will lead to almost complete paralysis.
The boy’s parents (no one involved in the case can be named) are fighting the doctors in court, the BBC reported today. They say his quality of life is reasonable—he can recognize them and respond to them, and he is happy when he spends time with his family.
“We are hopeful we can persuade the court that his quality of life is good enough so that treatment should not be withdrawn,” the boy’s mother said.
One doctor argued that the baby’s inability to indicate pain or distress had to be considered. As well, he said the child was going to experience a period of blindness, caused by treatment of his condition, and that splints used on his hands and feet periodically caused “discomfort.” He would also be at risk for fractures of his arms and legs during normal handling.
The child’s neurologist suggested the baby does not have normal mental capacity, but he said it was impossible to determine that for certain since the child cannot respond.
The case will be the first time a court has been asked to make a life or death ruling on a child with normal or near-normal levels of cognitive function, said Mr. Justice Holman who is hearing the case.
The incurable disease is a recessive genetic condition that affects one in 6,400 newborns.
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