The courts have authorized the cessation of care for a baby with a rare disease, against the advice of his parents who wanted him to be treated in the United States.
“This is by far the most difficult case in modern medicine.” It was in September 2014. At the time, the Poitiers University Hospital had authorized the cessation of care on a very premature baby, Titouan. Jean Leonetti, doctor and deputy, author of the eponymous law on the end of life, had commented on this particularly complex decision, both for judges, medical teams and parents. In this case, the latter were in favor of stopping the artificial life support of their child.
More frequently, the reverse occurs: parents request continued care for their baby, against medical advice, hoping that their child’s prognosis will improve. In Marseille, the Marwa affair thus moved public opinion. The family of the little girl, suffering from irreversible lesions and plunged into a coma, obtained justice for the continuation of care, thus opposing the initial decision of the hospital.
Charlie
Across the Channel, the press echoed a similar affair. Charlie, an eight month old baby, suffers from a rare genetic disease; his brain is badly damaged. The medical team at Great Ormond Street Hospital in London, where the baby is being treated, have spoken out in favor of stopping care. The case went to court.
Which made their decision on Tuesday. “Very heavy heart” but “fully convinced”, Judge Nicholas Francis said that doctors should disconnect the devices that keep the infant alive artificially. According to the experts consulted by the Court, the baby will never be able to heal. The judge himself went to the hospital to find out about the infant’s condition.
1.4 million euros raised
The child’s parents pushed a “no!” In desperation when the judge made his decision. They hoped to be able to take their son to the United States and put him there for a trial treatment to cure the mitochondrial disease he suffers from. More than 1.2 million pounds (approximately 1.4 million euros) had been raised on the internet to finance his treatment.
Laura Hobey-Hamsher, the family lawyer, said Charlie Gard’s parents were “devastated” by the court ruling and are considering appealing.
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