Charlie Gard case

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

Charlie Gard
Born	4 August 2016 London, United Kingdom
Died	28 July 2017 (aged 11 months 24 days)
Nationality	British
Parents	Chris Gard Connie Yates

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, and 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 he had seizures that caused additional brain damage in January, GOSH withdrew their support for the treatment, because they felt it was futile and would prolong whatever pain he 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.

In February, the Hospital asked the High Court to override the parents' decision. British courts and the European Court of Human Rights supported GOSH's position, and the parents eventually dropped their challenge and agreed to withdraw life support. The final court case, which concerned where and when to allow Gard to die, led to a ruling on 27 July that he should be transferred to a hospice and life support removed as soon as possible. On that day he was sent to a specialist children's hospice; mechanical ventilation was withdrawn and he died the next day at the age of 11 months and 24 days.

The case attracted widespread attention in Britain, the United States, and elsewhere, with expressions of concern and assistance to the Gard family offered by, among others, President Donald Trump and Pope Francis. At the time of his death, The Washington Post observed that the case "became the embodiment of a passionate debate over his right to live or die, his parents' right to choose for their child and whether his doctors had an obligation to intervene in his care."^[1][2]

Charlie Gard was born on 4 August 2016, at full term and at a normal weight, to parents Chris Gard and Connie Yates of Bedfont, 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 took him to his GP. On 2 October, 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, and investigations performed which included a cranial MRI scan.^[3]: 63

Diagnosis

On 11 October, Gard was taken to Great Ormond Street Hospital and put on a mechanical ventilator, because his breathing had become shallow.^{[3]: 45, 58} By the end of October, the doctors suspected that he 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.^[3]

The gene for RRM2B is in the cell nucleus; the protein it codes is necessary for generating nucleosides that are used to make deoxyribonucleic acid (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.^[4] Only 15 other cases of MDDS caused by mutations in RRM2B have been recorded.^[5] 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.^[3][4][6]

The hospital's ethics committee advised in November that Gard not be given a tracheostomy.^[3]: 59 By mid-December, he 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.^[3]

Experimental nucleoside treatment

In December, the parents contacted Dr. Michio Hirano, chief of the Division of Neuromuscular Disorders at Columbia University Medical Center in New York and an attending physician at NewYork–Presbyterian Hospital, a specialist in mitochondrial diseases, concerning his experimental nucleoside treatment for MDDS and their son's case.^[7][8][9]

On 30 December Gard's records were sent electronically to Hirano, and he and a member of the GOSH medical team discussed the case by telephone. Both doctors agreed that the experimental treatment was unlikely to help.^[3]: 75 Hirano and the medical team continued to email and discuss the treatment by telephone. Hirano held the view that there was a "theoretical possibility" that the treatment would provide some benefit, but that he needed a baseline MRI to rule out "severe brain involvement".^[3]: 77 An MRI was performed and seemed to show no structural damage to the brain.^[3]: 79

On 9 January 2017 Gard's notes indicated that the nucleoside treatment would go ahead in the next few weeks. One of his doctors applied to the ethics committee for approval. A committee meeting was scheduled for 13 January, and he was provisionally scheduled for a tracheostomy on 16 January.^{[3]: 79, 82} Hirano was invited to examine him in January, but did not make the journey.^[10]

On 9 or 10 January, Gard began having epileptic seizures, which continued until 27 January. This was deemed likely to have caused severe epileptic encephalopathy (brain damage), and the 13 January ethics committee meeting was postponed.^[3]: 82 On 13 January the GOSH doctors informed the parents that the brain damage had made the experimental treatment futile, and in light of the risk that he was suffering, they withdrew their support for it.^[3]: 83 They began discussions with the parents about ending life support and providing palliative care. The parents disagreed and wanted to take him to the United States to receive the nucleoside treatment.^[3][11] By this time relations between the parents and the doctors had deteriorated. One doctor emailed another to say that the parents had thrown a "spanner in the works".^[12]

On 30 January 2017, the parents launched an appeal on the crowdfunding Web site GoFundMe, seeking £1.3 million to finance experimental treatment in the United States and they reached their target in just over two months.^[13][14] By the end of April, before the appeal had run for three months, the total donations exceeded £1.3 million.^[12][15]

High Court, appointment of guardian

In the United Kingdom, disputes of this kind can be resolved in court under the Children Act 1989. The framework of that law is one of responsibility rather than rights. Parents have parental responsibility, as do public bodies that are involved, to take actions in the best interests of a child, and while the parents have the primary responsibility, 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.^[16][17]

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.^[18] The parents were not automatically eligible for legal aid; it is unclear whether they would have been eligible under an exemption, but they did not apply to the Legal Aid Agency.^[19] They were represented by a pro bono legal team, which the judge later characterized as "experienced and dedicated" and as providing "excellent assistance".^[3][20] Gard was joined as a party to the litigation by the judge, and his interests were represented by an unnamed court-appointed guardian.^[21] The guardian was represented by barrister Victoria Butler-Cole. The Telegraph later reported that the parents "privately expressed their concern" when they realised that Butler-Cole is the chair of Compassion in Dying, a sister organization of Dignity in Dying.^[22]

Arguments

The guardian testified that because of the risk that Gard was experiencing pain, and the low possibility that the treatment would work, it was in his best interests to withdraw mechanical ventilation.^[3] Doctors from GOSH testified that withdrawing treatment was in accordance with the guidelines laid out by the Royal College of Paediatrics and Child Health.^[3][23] The parents testified that they believed the nucleoside therapy could work, and that his brain damage was not as severe as the doctors thought.^[3] Hirano testified by telephone, with his identity kept anonymous like the other doctors involved, that the nucleoside therapy was unlikely to reverse the brain damage and had about a 10% chance of improving Gard's other complications from the disease.^[3]

On 11 April, Mr. Justice Francis ruled that it was in Gard's best interests to withdraw mechanical ventilation and provide palliative care only.^[3][20][24] The parents had three weeks to lodge an appeal.^[19]

Appeals

The Court of Appeal, on 25 May, refused to overturn the decision of the lower court in its ruling.^[25] 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.^[26] A final appeal was made to the European Court of Human Rights by the parents. This was also rejected.^[27] 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.^[28][29] On 30 June, the staff at the hospital agreed to give the parents more time with him.^[30]

Request for new hearing

In the first two weeks of July 2017, offers of assistance and expressions of support were made by the Vatican-owned Bambino Gesù Hospital in Rome, Italy,^[31] President Donald Trump,^[32] and two Republican United States congressmen.^[33] Pope Francis expressed solidarity with the parents, and said that their wishes should be respected, and human life should be protected.^[32][34] The judge dealing with the case stated that he would not be swayed by these interventions.^[35]

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 Gard: the Bambino Gesù Children's Hospital in Rome and Hirano's NewYork–Presbyterian Hospital in New York City. The letter also said that Hirano had new basic research findings that he judged made it more likely that the nucleoside therapy could help.^[21]

On 7 July, the hospital applied to the High Court for a fresh hearing on the basis of the letter.^[36] 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.^[37]

Hearings took place on 13 and 14 July. Hirano agreed to be identified in the latter hearing, and again had testified from New York City. The judge ruled that Hirano should evaluate Gard 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.^[38][39]

In a decision published on 24 July, Mr. Justice Francis said that during the week of 17 July there were consultations among the GOSH medical team, Hirano, and other doctors, and further medical tests including MRIs were conducted. The scans found that in some places on Gard's body there was no muscle left, and in other places muscle had been replaced with fat. The doctors and parents reached consensus that there was no longer any chance of the nucleoside treatment helping.^[21]

On 24 July, the barrister representing Gard and Yates publicly withdrew their request to fly their son to New York and their challenge to withdrawing mechanical ventilation and proceeding with palliative care. He 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.^[40][41]

His parents wanted to move Gard to private care and wanted to wait a "week or so" before they ended mechanical ventilation.^[42] The hospital objected on the basis that he needed intensive care and that mechanical ventilation should be ended soon. They went back to court, and on 27 July, the High Court ruled Gard should be moved to a specialist children's hospice and mechanical ventilation withdrawn.^[43] He was transferred to a hospice the same day.^[44] The next day his mother announced at 6:30 pm that he had died.^[45] The mechanical ventilator had been withdrawn; he was probably given morphine to relieve any pain beforehand, and probably died within minutes since he could not breathe on his own.^[45]

The case became notable for the worldwide reactions it generated. The statements made by the Pope and Trump received wide publicity, and were criticized for raising false hopes about the child's prospects.The intervention of Hirano and other individuals was criticised by the High Court judge and medical experts on the same grounds and for causing delays to the process.^{[7][46][12][47]}

Melanie Phillips, a British conservative, criticized U.S. conservative media for failing to provide proper legal and medical context, and instead invoked American notions of "parental rights." She said the controversy was shaped to persuade the United States public to accept conservative positions on the ongoing healthcare reform debate in the United States, as an example of the dangers of "socialized medicine" and of putative "death panels" in action.^[48][49][50] The High Court judge described arguments of commentators in the United States that Gard's plight was the result of the UK having a state-run national health service as "nonsensical".^[51]

Alasdair Seton-Marsden, who acted as a spokesman for the parents until they distanced themselves from him, was also criticized for using parental rights rhetoric, calling Gard "a prisoner of the state."^[52][53][54] Anti-abortionist groups in the United States also became involved in the Gard controversy, with U.S. groups demonstrating outside the London court.^[55]

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.^[56][57] The parents issued a statement condemning harassment of GOSH staff and said they had also received abusive messages.^[58]

On 24 July, GOSH released a statement criticizing Hirano for offering testimony without having physically examined Gard and without review of the medical records; they also said Hirano had disclosed that he had a financial interests in the treatment very late in the process.^{[7][10][59][60]} Hirano made a statement in response that he had relinquished his financial rights in the treatment.^[7]

The use of social media in this case was discussed by medical ethicists as presenting and portending a new challenge for the medical profession and the field of medical ethics; the parents used social media to amplify their views and gain support from the general public, but the medical team was limited in what it could say due to privacy obligations, and public opinion had no place in its decisions or procedures.^[51][61][62]

• Parents' rights movement
• Joseph Maraachli case
• Ashya King case
• Terri Schiavo case
• Haleigh Poutre

Judgments

• Family Division, Mr Justice Francis judgment 11 April 2017 (transcription published May)
• Court of Appeal (Civil) judgment 23 May 2017
• Supreme Court judgment 19 June 2017
• European Court of Human Rights 3 July 2017
• Family Division, Mr Justice Francis judgment 24 July 2017

Statements

• Great Ormond Street Hospital position statement on hearing of 13 July
• Great Ormond Street Hospital position statement, 25 July 2017
• Charlie Gard – a family’s real life story in the spotlight by the parents' media representative

Gard family website

• Charlie's Fight