April 16, 2024

British mother asks court to turn off her infant’s machine

Dispute with father

“Amicably separated” parents in Britain are at loggerheads over whether to let their disabled 13-month-old son die. RB, as the boy is called to protect the family’s privacy, has congenital myasthenia syndrome, a rare neuromuscular condition that prevents him from breathing on his own and severely restricts his power to move his limbs. The British health service has applied to the High Court in London to allow life-saving care to be withdrawn.

His doctor, who cannot be named, has described the child as at the “most severe end” of physical disability. He lacks the ability to cough or swallow and must be moved every two hours to prevent pressure sores. The mother believes that her child will be better off dead. But the father contends that he should have a tracheotomy so that he can be cared for at home. Unlike many children with severe developmental disorders, RB may have normal intelligence. The father contends that he can see, hear, feel, and recognise his parents and deserves to live.

Although most of the media presented a very dark picture of RB’s future, the Daily Mail published an open letter from the mother of a 10-year-old with a similar condition who went on to have a tracheotomy. He goes to school in a wheelchair and is a popular and well-loved child. “Today I look at my gorgeous, funny, cheeky little boy and I am endlessly grateful we gave him a chance to live,” writes Niki Shisler. She says that doctors are normally cautious and pessimistic and speculates that they may be too concerned about the cost of care. — BMJ, Nov 4   

Michael Cook