01 July, 2017
Who is baby Charlie Gard and what is mitochondrial depletion syndrome?
Charlie was born in August with a rare genetic condition called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, or MDDS, according to court records. His likelihood of survival is slim.
A terminally ill British baby will be given "more time" before life support is withdrawn, the 10-month-old boy's parents and a London children's hospital said Friday, days after the family lost a legal battle to take him to the USA for trial therapy.
In March, doctors told Charlie's parents that they did not believe that they could do anything further to treat their son, and recommended that they withdraw life support. They are not permitted to take him home, and they say that the hospital is "rushing" to turn off the ventilator. An exact timeline of withdrawal of care has not been made public, but prior to the hospital's announcement, the parents of Charlie Gard had asked to have one final weekend with their son.
The ECHR noted that the United Kingdom courts had concluded that "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". The courts sided with the doctors and hospital administrators each time.
"There will be no rush by Great Ormond Street Hospital to change Charlie's care and any future treatment plans will involve careful planning and discussion", she added.
"We are utterly heartbroken spending our last precious hours with our baby boy we're not allowed to choose if our son lives and we're not allowed to choose when or where Charlie dies".
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Instead, the couple says the life support machine will be turned off in a hospital later today.
However, the court in Strasbourg, France, ultimately ruled that the imperative to act in Charlie's best interests and not prolong his suffering outweighed the vanishingly small likelihood of successful treatment.
Chris Gard and Connie Yates wanted the 10-month-old, who suffers from a rare genetic condition and has brain damage, to be allowed to die at home.
Despite his parents' extreme objections and wishes to bring their son to the USA for experimental treatment.
His parents said they had been denied their final wish to be able to take their son home to die and felt "let down" following the lengthy legal battle.