The case of 11-month-old Charlie Gard, who suffers from a rare genetic disease, has raised questions over who should decide on his treatment. His parents have watched courts in the UK and Europe deny their wishes.
Great Ormond Street Hospital in London which is treating baby Charlie Gard asked for permission from the courts to remove life-support which is keeping the blind and deaf baby alive. Charlie cannot breathe on his own and suffers from frequent epileptic seizures.
But despite the opinions of his doctors, Charlie's parents want to take him to the United States for experimental treatment they think may give him a chance of life and have raised $1.7 million (1.5 million euros) to finance the trip. Charlie is believed to be one of 16 children in the world with encephalomyopathic mitochondrial DNA depletion syndrome, the result of a genetic mutation. There is no known cure.
In recent weeks, Charlie's parents have watched as three courts in Britain and the European Court of Human Rights rejected their appeal. Judges argued that prolonging the baby's life would be inhumane and unreasonable.
"Although Charlie's parents have parental responsibility, overriding control is by law vested in the court exercising its independent and objective judgment in the child's best interests," the hospital said in a statement. The High Court ruled that Charlie would face significant harm if his suffering were to be prolonged.
The European Court of Human Rights last week confirmed the UK court rulings and issued a statement saying "it was most likely Charlie was being exposed to continued pain, suffering and distress, and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm."
Rights of the child, rights of the parents
Established human rights law dictates that the rights of a child should take precedence over the rights of their parents.
Charlie's parents appear to have accepted the court decisions. "We are really grateful for all the support from the public at this extremely difficult time," his mother said on Friday. "We're making precious memories that we can treasure forever with very heavy hearts. Please respect our privacy while we prepare to say the final goodbye to our son Charlie."
Great Ormond Street Hospital issued a statement: "In Charlie's case we have been discussing for many months how the withdrawal of treatment may work."
"There would be no rush for any action to be taken immediately," the hospital said, adding that it would consult the family and that "discussions and planning in these situations usually take some days."
Who is to decide
At the weekend, Pope Francis entered the debate as to who should decide on the baby's fate when Vatican Radio reported the pope had been following the case, praying for the parents "that their desire to accompany and care for their own child to the end is not ignored."
The Vatican-run Bambino Gesu hospital in Rome said on Monday it would be willing to take Charlie in as a patient.
US President Donald Trump also sent out a Tweet on Monday saying the US would be "delighted" to help
Courts in the United States are less inclined to get involved and cases are usually left to doctors, in consultation with parents, to decide on a child's treatment.
jm/rc (AFP, AP)