Charles Matthew William Gard was born on 4 August 2016, at full term and normal weight, to Christopher Gard, a postman, and Constance Yates, a carer for young people with learning difficulties, both of Bedfont, west London. He seemed to develop normally at first, but his parents noticed after a few weeks that he was less able to lift his head, and they took him to his GP. On 2 October 2016, they reported that he was being breastfed every 2–3 hours but was not gaining weight. He was fed a high-calorie formula through a nasogastric tube, an ECG was carried out, and a cranial MRI scan was performed on 7 October.

The hospital’s ethics committee advised in November 2016 that Charlie should not be given a tracheostomy. In mid-December, he began having persistent seizures as his brain function deteriorated. He had become deaf, his heart and kidneys were failing, and he could no longer breathe or move independently. It was unclear whether he could feel pain.

In December 2016, Michio Hirano, chief of the Division of Neuromuscular Disorders at Columbia University Medical Center, and an attending neurologist at New York–Presbyterian Hospital, who had worked on nucleoside therapy in collaboration with researchers in Italy, Spain and Central America, administering the therapy to 18 human patients, was contacted.

Hospitals in the US make the same kind of plausibility analysis when they consider experimental treatment. New York–Presbyterian Hospital would have needed approval to give Charlie the nucleoside therapy under the US compassionate-use framework. Charlie’s parents felt any chance to save his life was worth trying. Their attempt to take Charlie to New York began when the London Hospital did not obtain approval to administer the experimental treatment – there was no question of its medical or technical inability to administer the treatment. Had Charlie travelled to New York a similar regulatory process would have been required. This point was not raised within the court process; the case proceeded, both in court and in the wider public debate, on the basis that the experimental treatment was not available in London but was available in New York. In evidence in April Hirano had said that he would defer to “ICU people”, i.e he would not administer the experimental treatment if the intensivists at his hospital advised against it, as the GOSH ethics committee had in November 2016 and intensivists at GOSH had in January 2016.

After Charlie’s death, The New York Times observed that only rarely is there such intense conflict between doctors and parents. CAFCASS reports that in England, it was involved in 18 parent-doctor disputes in 2016 that ended up in court. Hospitals discussed existing methods that have proved effective for avoiding disputes over children’s care.

On 9 January 2017, notes kept by GOSH doctors recorded that the team intended to attempt the nucleoside treatment at GOSH in the next few weeks. One of the doctors applied to the hospital’s ethics committee for approval. A committee meeting was scheduled for 13 January, and Charlie was provisionally scheduled for a tracheostomy on 16 January. GOSH invited Hirano to examine him in January, but he did not examine Charlie until July.

On 30 January 2017, the parents launched an appeal on the crowdfunding website GoFundMe to finance experimental treatment in the United States. Donations had exceeded £1.3 million by the end of April. The publicity campaign was well under way before the legal process had started. At no time during the court process was any criticism levelled at the parents for this campaign and there was no suggestion that the court’s powers be used to limit or control this publicity.

On 7 July 2017, GOSH made application for the case to return to the High Court. In a public statement, GOSH explained why it had applied “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. And we believe, in common with Charlie’s parents, it is right to explore this evidence”. The hospital stated it was bound by the previous ruling of the High Court, which expressly forbade them from transferring Charlie for nucleoside therapy anywhere, and the application was made to ask the Court to reconsider the case after weighing the evidence regarding the treatment, and specifically, its ability to cross the blood-brain barrier to treat Charlie’s encephalopathy. In its application to the High Court for a second hearing GOSH said that the parents, through their solicitors “not for the first time raised the prospect of criminal proceedings against the hospital and its staff”.

On 24 February 2017, GOSH asked the High Court to exercise its inherent jurisdiction. GOSH sought orders:

On 27 July 2017 Charlie was transferred to a hospice and the next day his mother announced at 6:30 pm that he had died. The mechanical ventilator had been withdrawn; he was given morphine to relieve any pain beforehand, and died within minutes.