Charlie Gard (4 August 2016 – 28 July 2017) was a British boy from Bedfont, London, who was born with mitochondrial DNA depletion syndrome, a rare genetic condition that causes progressive brain damage and muscle failure. There is no treatment and it causes death in infancy.

Gard's parents, Chris Gard and Connie Yates, brought him to Great Ormond Street Hospital (GOSH) in October 2016 because he was having trouble breathing, where he was put on mechanical ventilation. His condition continued to deteriorate, and the genetic condition was diagnosed in November. The medical team and parents initially agreed to attempt an experimental treatment. After Gard had seizures that caused more brain damage in January, GOSH withdrew their support for the treatment because they felt it was futile and would prolong whatever pain Gard was feeling. The medical team thought it was in his best interests to withdraw life support and proceed with palliative care, but the parents still wanted to try the treatment.

This disagreement led to a series of court cases. The courts consistently supported GOSH's position, and the parents eventually dropped their challenge and agreed to withdraw life support. The final court case, about how to allow the child to die, led to a ruling on 27 July that he should be transferred to a hospice. On that day he was transferred to a specialist children's hospice; mechanical ventilation was withdrawn the next day and Gard died at the age of 11 months and 24 days.

Background

Charlie Gard was born on 4 August 2016 to parents Chris Gard and Connie Yates of Bedfont, London. He initially developed normally, but in early October his parents brought him to their local general practitioner because they were concerned that he was not gaining weight. On 11 October, he was taken to Great Ormond Street Hospital and put on a mechanical ventilator because he was having trouble breathing. By the end of October, the doctors suspected that Gard had mitochondrial DNA depletion syndrome (MDDS), a set of rare diseases caused by mutations in genes essential for mitochondria to function. This diagnosis was confirmed by a genetic test in mid-November, which found that he had two mutated versions of the gene coding for the RRM2B protein.

The gene for RRM2B is in the cell nucleus; the protein it codes is necessary for generating nucleosides that are used to make DNA in mitochondria. The mitochondria fail in people lacking a functional version of this protein, causing brain damage, muscle weakness (including in muscles used to breathe) and organ failure, and usually leads to death during infancy. Only 15 other cases of MDDS caused by mutations in RRM2B have been recorded. As of April 2017, there were only experimental treatments for MDDS; these had been used only a few times with little evidence of efficacy, and had not been tried with anyone who had the RR2MB variant of the disease nor anyone with the kind of MDDS that affects the brain, as the RRM2B variant does.

By mid-December, Gard began having persistent seizures as his brain function deteriorated. He had become deaf, his heart and kidneys were failing, and he lacked the ability to breathe or move or open his eyes independently. It was unclear as to whether he could experience pain.

By January 2017, the parents and medical team decided to attempt an experimental treatment in which nucleosides would be given to the child in a drink, but while they were applying for approval from the ethics committee to do so, Gard had severe seizures that caused further damage to his brain. The GOSH doctors determined that the damage had made the experimental treatment futile, and in light of the risk that the child was experiencing pain, they withdrew their support for it. They began discussions with the parents about ending life support and providing palliative care during the short time it would take the child to die. The parents disagreed and wanted to take Gard to the United States to receive the nucleoside treatment.

In the United Kingdom, such a dispute can be resolved in court under the Children Act 1989. The framework of that law is parental responsibility, wherein the parents have the primary responsibility to take actions in the best interests of a child, but if a public body believes a parental decision will cause significant harm to a child, it can ask the courts to intervene to override the parents' decision.

Litigation

On 24 February 2017, Great Ormond Street Hospital applied to the High Court for mechanical ventilation to be withdrawn, as is standard procedure in the UK for this kind of disagreement. The parents did not apply for legal aid and were represented by a pro bono legal team. The baby was joined as a party to the litigation by the judge, and his interests were represented by an unnamed court-appointed guardian, represented by barrister Victoria Butler-Cole. Gard's parents "expressed concern" when it subsequently became known that Butler-Cole was associated with Dignity in Dying. The guardian testified that, because of the risk that the baby was experiencing pain, and the low possibility that the treatment would work, it was in his best interests to withdraw mechanical ventilation. Doctors from GOSH testified that withdrawing treatment was in accordance with the guidelines laid out by the Royal College of Paediatrics and Child Health. The parents testified that they believed the nucleoside therapy could work, and that the baby's brain damage was not as severe as the doctors thought.

On 11 April, Mr. Justice Francis ruled that it was in the baby's best interests to withdraw mechanical ventilation and provide palliative care only. The judge noted that the American doctor proposing the nucleoside treatment said that it was "very unlikely that he will improve" with the proposed therapy and said that the therapy was unlikely to reverse the brain damage. After he waived his right to anonymity, the doctor was later identified as Michio Hirano, a professor of neurology at Columbia University, attending physician at NewYork–Presbyterian Hospital, and specialist in mitochondrial diseases. GOSH had invited Hirano to examine the child in January, but he had not come before he testified by telephone in April. Hirano did not disclose at this time, but did at a later hearing, that he had financial interests in the treatment. The parents had not accessed Legal Aid and were left with less than three weeks to lodge an appeal.

The Court of Appeal, on 25 May, refused to overturn the decision of the lower court in its ruling. A panel of three justices at the Supreme Court refused permission to appeal from this decision, on the grounds that there was not an arguable point of law. A final appeal was made to the European Court of Human Rights by the parents. This was also rejected. In June, the parents said that they wanted to take their son home to die or bring him to a hospice, and that the hospital had denied this; the hospital would not comment due to patient confidentiality. It was announced that his life support would be withdrawn on 30 June. On 30 June, the staff at the hospital agreed to give the parents more time with him.

A few days after the European court ruling, the parents' solicitor wrote to GOSH arguing that GOSH had a duty to apply for a new hearing, as two hospitals were willing to treat the baby: the Bambino Gesu Children’s Hospital in Rome and Hirano's New York Presbyterian Hospital in New York. The letter also claimed that Hirano had new basic research findings that he judged made it more likely that the nucleoside therapy could help.

On 7 July, the hospital applied to the High Court for a fresh hearing on the basis of the letter. On 10 July, at a preliminary hearing, Mr. Justice Francis made plans for a further full-day hearing on 13 July, asking the parents to set out any new evidence they had on the day before.

Hearings took place on 13 and 14 July. Hirano agreed to be identified in the latter hearing. The judge ruled that Hirano should evaluate the child and consult with the hospital staff; the judge said he would issue a new ruling on 25 July, after he had received and reviewed Hirano's report.

On 24 July, the barrister representing Gard and Yates withdrew their request to fly their son to New York and their challenge to withdrawing mechanical ventilation and proceeding with palliative care. He said that Hirano, after examining the child and consulting with GOSH staff, was no longer willing to offer the experimental therapy because he saw no chance of it working due to irreversible muscle damage caused by the disease. The barrister added that Gard and Yates had made the decision on 21 July but had wanted to spend the weekend with their son without media attention.

The parents wanted to move Gard to private care and offered no timeline to end mechanical ventilation. The hospital objected on the basis that Gard needed intensive care and that mechanical ventilation should be ended soon. On 27 July, the High Court ruled that the child should be moved to a specialist children's hospice and mechanical ventilation withdrawn. Gard was transferred to a hospice the same day, where mechanical ventilation was withdrawn and he died.

Public sphere

At the end of January 2017, the parents launched an appeal on the crowdfunding website GoFundMe, seeking £1.2 million to finance experimental treatment in the US. They reached their target in just over two months. By the end of April, before the appeal had run for three months, the total donations exceeded £1.3 million.

There was a large response on social media, some associated with the family's attempt to crowdfund the experimental therapy and some with the politics and the ethics of the case. Eventually reactions to the case were seen from across the globe and this fuelled public interest. The case attracted widespread media coverage and triggered debate about the right of courts to overrule family wishes, the perceived deficiencies of "socialised medicine" in the UK, government control of medical decisions, and of the fundamental right to life. Anti-abortionist groups in the US. commented and groups came to London to campaign and demonstrate at the doors of the court. The US Speaker of the House of Representatives, on July 13 tweeted "I stand with #CharlieGard & his parents. Healthcare should be between patients & doctors-govt has no place in the life or death business." An American Senator tweeted "No hospital no gov't has the right to deny parents their chance for a medical miracle. I stand with #CharlieGerd. On 11 July an American Congressman claimed that Great Ormond Street Hospital had "omnisciently decided to literally hold him hostage..." In the first two weeks of July 2017, offers of assistance were made by the Vatican-owned Bambino Gesù Hospital in Rome, Italy, Pope Francis, US President Donald Trump, and two Republican US congressmen. The judge dealing with the case stated that he would not be swayed by these interventions which were criticised as cruel, ill-informed and unhelpful

On 22 July, the chairwoman of GOSH made a statement condemning "thousands of abusive messages", including death threats received by staff at the hospital and harassment of other families in the hospital over the preceding weeks. GOSH also requested the Metropolitan Police Service investigate the abuse. The parents issued a statement condemning harassment of GOSH staff and said they had also received abusive messages.

The interventions of Hirano and other individuals were criticised by the High Court judge and medical experts for causing delays to the process and giving the parents false hope of a chance of recovery for their child.