Most contested cases of removing babies or profoundly disabled adults from needed life support have involved those with serious brain injuries or cognitive impairments. But once the idea that dead is better than disabled takes hold, it will soon spread to those with physical disabilities.
Now, in the UK, parents are fighting over withdrawing life support from a seriously disabled one-year-old child who is cognitively normal. From the story:
The mother of a chronically ill baby has defended her court battle with the child’s father to have his life support machine turned off. The boy, known only as RB, has congenital myasthenic syndrome, a rare neuromuscular condition that severely limits limb movement and the ability to breathe independently. He has been hospitalized since birth. Doctors want to take the 1-year-old off a ventilator, which helps him breathe, but the boy’s father, who is separated from his mother, opposes the plan. The hospital trust which provides his care has taken the case to the High Court. If the trust wins, it would be the first time a British court has ruled against the wishes of a parent whose child does not suffer from brain damage.
In a statement, the mother’s lawyer, Anthony Fairweather said: “RB’s mother has sat by her son’s bedside every day since he was born. “In her mind the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child,” the statement said. But lawyers for the father argue the baby’s brain is unaffected by the condition and that he can see, hear, feel and recognize his parents. They will submit video footage, which they say shows Baby RB playing with toys, enjoying and listening to music and interacting with his parents. The father argues that a tracheotomy, where a hole is made in the neck to allow air to reach his lungs, would allow his son to leave hospital and be cared for at home.
This is an important case. First, shouldn’t the benefit of the doubt go to life? Second, shouldn’t everything be done to try and help the boy live instead of die? Third, that a hospital arguing to end life is very alarming. Finally, if the hospital/mother win the case, the message that would be sent by taking a child out of life against the wishes of a parent solely because of disability is that dead is better than disabled. As a society, do we really want to accept that meme?
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