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Charlie Gard case explained Charlie Gard case explained
(14 days later)
Doctors have asked the High Court to hear new evidence in the case of terminally ill Charlie Gard. The parents of Charlie Gard have decided to end their legal fight over his treatment after a recent MRI scan showed he had irreversible brain damage.
The 11-month-old is on life support at Great Ormond Street Hospital (GOSH).The 11-month-old is on life support at Great Ormond Street Hospital (GOSH).
Why have they come to this decision?
A US doctor, Dr Michio Hirano, travelled to the London hospital last week to see if Charlie would be suitable to receive an experimental therapy - but results of an MRI scan showed that it was too late for the treatment.
Lawyers representing the parents said time had run out for Charlie and they no longer wanted to take him to the US.
The parents say he could have lived a normal life if he had been given treatment earlier, but they now want to treasure the short time they have left with him.
The couple will also now hold discussions with GOSH over how Charlie should be allowed to die.
Chris Gard and Connie Yates announced their decision as a High Court judge was preparing to oversee the latest round of a five-month legal battle.
What is wrong with Charlie?What is wrong with Charlie?
Charlie has an exceptionally rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS).Charlie has an exceptionally rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS).
Although he appeared perfectly healthy when he was born, his health soon began to deteriorate.Although he appeared perfectly healthy when he was born, his health soon began to deteriorate.
Charlie now has severe brain damage.Charlie now has severe brain damage.
He cannot open his eyes or move his arms or legs.He cannot open his eyes or move his arms or legs.
His condition also means he is unable to breathe unaided, which is why he needs to be on a ventilator.His condition also means he is unable to breathe unaided, which is why he needs to be on a ventilator.
Charlie's heart, liver and kidneys are also affected, and his doctors say it is not clear if he feels pain.Charlie's heart, liver and kidneys are also affected, and his doctors say it is not clear if he feels pain.
Can't he be treated? Can he be treated?
Charlie's parents, Connie Yates and Chris Gard, from Bedfont in west London, want Charlie to have an experimental treatment called nucleoside therapy. Charlie's parents, Connie Yates and Chris Gard, from Bedfont in west London, wanted Charlie to have an experimental treatment called nucleoside therapy.
A hospital in the US has agreed to offer Charlie the treatment, and Charlie's parents have raised funds to take him there. A hospital in the US agreed to offer Charlie the treatment, and Charlie's parents had raised funds to take him there.
But Charlie's doctors at GOSH do not think this is the right care for Charlie. But Charlie's doctors at GOSH said they did not think it was the right treatment for him.
They say they have explored various treatment options, including nucleoside drug therapy, and none would improve Charlie's quality of life. After exploring various treatment options, including nucleoside drug therapy, the doctors came to the conclusion that none of them would improve Charlie's quality of life.
They say Charlie's life support should be switched off and he should be allowed to die. They said Charlie's life support should be switched off and he should be allowed to die with dignity.
How did Charlie's doctors reach this decision?How did Charlie's doctors reach this decision?
Charlie's doctors say his brain is extensively damaged at a cellular level. Charlie's doctors said his brain was extensively damaged at a cellular level.
They say the US clinician offering the experimental treatment agrees it will not reverse this brain damage. They said the US clinician offering the experimental treatment agreed it would not reverse this brain damage so GOSH applied to the High Court for judges to decide Charlie's future.
GOSH applied to the High Court for judges to decide Charlie's future.
The High Court agreed with the GOSH doctors.The High Court agreed with the GOSH doctors.
Charlie's parents then appealed against the decision, but courts ruled that the original decision should stand and that it would be in Charlie's best interests to be allowed to die with dignity.Charlie's parents then appealed against the decision, but courts ruled that the original decision should stand and that it would be in Charlie's best interests to be allowed to die with dignity.
Why is the case back in the courts? Why did the case return to the courts?
GOSH says it has applied to the High Court for a fresh hearing "in light of claims of new evidence" relating to potential treatment for Charlie's condition. GOSH applied to the High Court for a fresh hearing "in light of claims of new evidence" relating to potential treatment for Charlie's condition.
Two international hospitals and their researchers have been in touch with GOSH with more information about nucleoside therapy - drugs designed to help treat MDDS. Two international hospitals and their researchers got in touch with GOSH with more information about nucleoside therapy - drugs designed to help treat MDDS.
Meanwhile, the Pope and US President Donald Trump have offered to intervene and support Charlie's parents' plea. The Pope and US President Donald Trump also offered to intervene and support Charlie's parents' plea.
The president of the Royal College of Paediatrics and Child Health, however, says such interventions from high-profile figures, no matter how well-intended, are "unhelpful". The president of the Royal College of Paediatrics and Child Health, however, said such interventions from high-profile figures, no matter how well-intended, were "unhelpful".
Charlie's doctors say their view has not changed - they still think the experimental treatment would be unjustified.
But they believe it is right to seek the High Court's view again.
What is nucleoside therapy?What is nucleoside therapy?
The therapy is a treatment, not a cure. And it is highly experimental.The therapy is a treatment, not a cure. And it is highly experimental.
It has been used on some patients, but none with Charlie's type of MDDS.It has been used on some patients, but none with Charlie's type of MDDS.
There haven't yet been any trials in mice to see if it would work in Charlie's condition, which is caused by a mutation of a gene called RRM2B. The faulty DNA means Charlie's cells can't easily make energy to power his muscles and brain. There have not yet been any trials in mice to see if it would work in Charlie's condition, which is caused by a mutation of a gene called RRM2B. The faulty DNA means Charlie's cells cannot easily make energy to power his muscles and brain.
Doctors say it doesn't look as though there will be time to run such tests before reaching a decision about Charlie's care.
GOSH did apply for ethical permission to attempt nucleoside therapy on Charlie.GOSH did apply for ethical permission to attempt nucleoside therapy on Charlie.
By the time that decision was made, however, Charlie's condition had greatly worsened and the view was that his brain damage was too severe and irreversible for the treatment to help.By the time that decision was made, however, Charlie's condition had greatly worsened and the view was that his brain damage was too severe and irreversible for the treatment to help.
Prof Julian Savulescu, an independent ethics expert at the University of Oxford, said: "More than six months have passed since experimental therapy was first considered. We don't know how bad Charlie's brain damage is now. Whether experimental therapy is still warranted depends on whether there remains any prospect of any meaningful life."Prof Julian Savulescu, an independent ethics expert at the University of Oxford, said: "More than six months have passed since experimental therapy was first considered. We don't know how bad Charlie's brain damage is now. Whether experimental therapy is still warranted depends on whether there remains any prospect of any meaningful life."
The High Court is now being asked to judge the evidence on this crucial point. The High Court was due to judge on that crucial point.
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