Great Ormond Street hospital has applied to the high court for a fresh hearing in the case of critically ill baby Charlie Gard, to decide whether it is in the baby’s interests to be given an experimental drug.
The application to the court follows a letter from seven doctors urging the hospital to reconsider the possibility of treatment.
The clinicians and researchers say in their letter, sent from the Vatican children’s hospital in Rome, that unpublished data suggests that 11 month-old Charlie’s condition could potentially improve if he is given experimental nucleoside therapy.
Great Ormond Street hospital won permission from the courts to turn off Charlie’s life support systems, on the advice of its own experts. They said his condition, caused by a rare mitochondrial disease, was irreversible and that further treatment could cause him suffering.
But the hospital now wants the court to decide whether Charlie should be given the experimental drug, as urged by doctors in the United States and Rome.
“Two international hospitals and their researchers have communicated to us as late as the last 24 hours that they have fresh evidence about their proposed experimental treatment,” the hospital said in a statement after a meeting with Charlie’s parents, Connie Yates and Chris Gard, who have fought to keep his treatment going.
“And we believe, in common with Charlie’s parents, it is right to explore this evidence.”
Speaking outside Great Ormond Street hospital after the news of the high court application, Yates said: “We are quite happy with this outcome and we are hopeful and confident that Charlie may get his chance now.”
Great Ormond Street has to go back to the high court because it is bound by the earlier ruling, which expressly forbade staff from transferring Charlie for nucleoside therapy anywhere in the world.
“This ruling has been upheld by the court of appeal, the supreme court and the European court of human rights,” said the statement.
“It has also been supported unequivocally by some of the world’s most distinguished clinicians and scientists. The ruling also states that it is in Charlie’s best interests for artificial ventilation to be withdrawn and for his clinicians to provide him with palliative care only.
“The ruling of Mr Justice Francis states: ‘It is lawful, and in Charlie’s best interests not to undergo nucleoside therapy, provided always that the measures and treatments adopted are the most compatible with maintaining Charlie’s dignity.’ Great Ormond Street hospital is therefore giving the High Court the opportunity to objectively assess the claims of fresh evidence.”
The signatories, who state they are experts in mitochondrial diseases, say that the drug has not been tested in a child with Charlie’s condition. Ideally, it would be tried first on a mouse model – a mouse genetically engineered to have Charlie’s condition.
But the clinicians, from the Bambino Gesù paediatric hospital’s neurosciences department, say in their letter that there is no time and tests in mice and patients with a similar, but not identical, genetic condition had shown “dramatic clinical improvements”.
In the light of this new data, they say in their letter to Great Ormond Street, “reconsideration of treatment for Charlie Gard is respectfully advocated”.
Charlie has severe brain damage and cannot see or hear or breathe for himself because of a mitochondrial condition caused by a faulty gene he inherited from his parents. After Great Ormond Street won permission to turn off life support, Charlie’s parents fought all the way to the European court in Strasbourg, which sided with the hospital.
The case has attracted international attention. The pope expressed support for the parents and Donald Trump wrote on Twitter that the US would do anything it could to help.
Great Ormond Street, however, made it clear that its doctors’ views have not changed. The statement says that they considered nucleoside therapy but believed it could cause him more suffering.
“Charlie’s condition is exceptionally rare, with catastrophic and irreversible brain damage,” said the statement.
“Our doctors have explored every medical treatment, including experimental nucleoside therapies. Independent medical experts agreed with our clinical team that this treatment would be unjustified. Not only that, but they said it would be futile and would prolong Charlie’s suffering. This is not an issue about money or resources, but absolutely about what is right for Charlie. Our view has not changed.”
The hospital’s only concern is the best interests of Charlie Gard, it says. “We respectfully acknowledge the offers of help from the White House, the Vatican and our colleagues in Italy, the United States and beyond.
“We would like to reassure everyone that Great Ormond Hospital will continue to care for Charlie and his family with the utmost respect and dignity through this very difficult time.”
