Charlie Gard case

Charles Matthew William Gard
Born (2016-08-04)4 August 2016
London, UK
Died 28 July 2017(2017-07-28) (aged &&&&&&&&&&&&035811 months 24 days)
Cause of death Mitochondrial DNA depletion syndrome
Nationality British
Parent(s)
  • Chris Gard
  • Connie Yates

Charles Matthew William "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. The case became controversial because the medical team and parents disagreed about whether experimental treatment was in Charlie's best interests.[1][2][3][4]

In October 2016 Charlie was transferred to London's Great Ormond Street Hospital (GOSH), a National Health Service children's hospital, because he was failing to thrive and his breathing was shallow. He was placed on mechanical ventilation, and in November the genetic condition was diagnosed. The following month the parents contacted a neurologist in New York who was working on an experimental treatment. He and GOSH agreed to proceed with the treatment, funded by the National Health Service. In January, after Charlie had seizures that caused brain damage, GOSH formed the view that further treatment was futile and might prolong suffering. They began discussions with the parents about ending life support and providing palliative care.

Charlie's parents wanted to try the experimental treatment and raised funds for a transfer to a hospital in New York. In February 2017, GOSH asked the High Court to override the parents' decision. The British courts and the European Court of Human Rights supported GOSH's position. After the New York neurologist pioneering the experimental treatment had visited the UK, examined scans of Charlie's brain and muscles, and said the treatment was unlikely to help Charlie at all at this late stage in the disease, the parents agreed to the withdrawal of life support. The final hearing, which concerned where and when to allow Charlie to die, led to a ruling on 27 July that he should be transferred to a hospice and life support removed. On that day he was sent to a specialist children's hospice, mechanical ventilation was withdrawn, and he died the next day at the age of 11 months and 24 days.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 and reverberated around the world, with expressions of concern and assistance offered by, among others, President Donald Trump and Pope Francis, with right wing American public figures seeking to relate Charlie's case to the US healthcare debate. At the time of Charlie's death, The Washington Post opined 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."[5][6]

First weeks

Charles "Charlie" Matthew William Gard was born at full term and normal weight to Chris Gard, a postman, and Connie Yates, a carer for young people with learning difficulties, both of Bedfont, west London.[7][8]:44 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, 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 an ECG was carried out.[8]:44 A cranial MRI scan was performed on 7 October.[8]:63

Hospital treatment

Diagnosis

Part of Great Ormond Street Hospital, London

On 11 October, Charlie was taken to Great Ormond Street Hospital (GOSH) and put on a mechanical ventilator, because his breathing had become shallow.[8]: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.[8]

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 muscles used to breathe) and organ failure, and usually leads to death during infancy.[9] Only 15 other cases of MDDS caused by mutations in RRM2B have been recorded.[10] As of April 2017, there was only one experimental treatment for MDDS based on nucleoside supplementation, used on mice and human patients carrying a mutation in a different gene (TK2), which also impairs the synthesis of nucleosides in mitochondria causing a less severe form of MDDS[8][9][11].

The hospital's ethics committee advised in November that Charlie not be given a tracheostomy.[8]:59 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.[8]

Experimental nucleoside treatment

Neurological Institute of New York, Columbia University Medical Center

In December, the parents contacted Dr Michio Hirano, chief of the Division of Neuromuscular Disorders at Columbia University Medical Center, and an attending physician at NewYork–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.[12][13][14]

On 30 December Charlie'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 if there was irreversible brain damage.[8]:75 Hirano and the medical team continued to email and discuss the treatment by telephone. Hirano said 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".[8]:77 An MRI was performed and seemed to show no structural damage to the brain.[8]:79

On 9 January 2017 notes kept by GOSH doctors recorded that the team intended to attempt the nucleoside treatment 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.[8]:79, 82 GOSH invited Hirano to examine him in January, but he did not examine Charlie until July.[15]

On 9 or 10 January, Charlie began having epileptic seizures, which continued until 27 January. These were deemed likely to have caused epileptic encephalopathy (brain damage), and the 13 January ethics committee meeting was postponed.[8]:82 On 13 January the GOSH doctors informed Charlie's 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.[8]:83

Termination of life support proposed

Great Ormond Street Hospital 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.[8][16] By this time relations between the parents and the doctors had deteriorated. One GOSH doctor emailed another to say: "parents are spanner in the works. Recent deterioration with worsening seizures means trial is not in his best interests." This email emerged in the subsequent court case; the judge said of this: "I can understand how distressing it must have been for the parents to read this email when they were later shown the hospital records. However, in my judgment, it is important to view this comment in its proper context. The context was private notes passing between two eminent consultants about what was in Charlie's best interests."[17][8]:84–86

On 30 January 2017, the parents launched an appeal on the crowdfunding website GoFundMe to finance experimental treatment in the United States.[18][19] By the end of April, donations exceeded £1.3 million.[20]

Court proceedings

High Court

The court proceedings were under the inherent jurisdiction of the High Court (wardship).[21][22] In wardship the High Court assumes parental rights and responsibilities if an application is made to it and if the court deems the application appropriate.[note 1] Within wardship proceedings, the child is joined as a party and a guardian ad litem appointed. Parents and public bodies have a responsibility to take actions in the best interests of a child. Doctors treat children with the consent of the parents.[24] 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.[25][26]

On 24 February 2017, GOSH asked the High Court to exercise its inherent jurisdiction.[27] 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.[28] They were represented by a pro bono legal team, which the judge later characterized as "experienced and dedicated" and as providing "excellent assistance".[8][29] Charlie was joined as a party and a guardian ad litem was appointed under the Children and Family Court Advisory and Support Service (CAFCASS).[30] Victoria Butler-Cole, a barrister, represented the guardian. 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.[31]

Testimony and decision

The guardian testified that because of the risk that Charlie was in pain, and the low chance that the treatment would work, it was in his best interests to withdraw mechanical ventilation.[8] Doctors from GOSH testified that withdrawing treatment complied with Royal College of Paediatrics and Child Health guidelines.[8][32] A GOSH nurse testified that she had not seen Charlie respond to his parents or to any other stimulus, and that it was not possible to know whether he was suffering.[8]:68 [33] The parents testified that they believed the nucleoside therapy could work, and that his brain damage was not as severe as the doctors thought.[8] Hirano testified by telephone, with his identity kept anonymous like the other doctors involved. He described his work with people and mice with the TK2-mutation form of MDDS, reporting that the patients under the treatment improved muscular strength, becoming less dependent on ventilators, and did not develop seizures compared to those not receiving nucleoside supplements. He said the therapy was unlikely to reverse structural brain damage, but that if the case were at his hospital, he would be willing to offer the treatment if the parents so desired, but would defer first to the intensive care to make the decision[8].

On 11 April, Mr Justice Francis ruled that it was in Charlie's best interests to withdraw mechanical ventilation and provide palliative care only.[8][29][34] The parents had three weeks to lodge an appeal.[28]

Appeals

The Court of Appeal, on 25 May, refused to overturn the lower court's decision.[35] A panel of three justices at the Supreme Court refused permission to appeal, on the grounds that there was no arguable point of law.[36] A final appeal was made to the European Court of Human Rights by the parents. This was also rejected.[37]

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 Charlie's confidentiality. It was announced that his life support would be withdrawn on 30 June.[38][39] On 30 June, the staff at the hospital agreed to give the parents more time with him.[40]

Offers of assistance

Public figures

In the first two weeks of July 2017, offers of assistance and expressions of support were made by President Donald Trump, who said the US would be "delighted to help",[6][41] Vice-President Mike Pence,[42] and two Republican congressmen.[43] Pence called Charlie's case "heartbreaking" and said that "the American people oughta reflect on the fact that for all the talk on the left about single-payer, that’s where it takes us”.[42]

The Vatican issued a statement on 2 July.[44] Pope Francis expressed solidarity with the parents, and said that their wishes should be respected, and human life should be protected. The Pope said that "to defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all".[6][41][44] The parents said the expressions of support had given them new hope, according to The Washington Post,[6] but the presiding judge said he would not be swayed.[45]

Hospitals

A few days after the European court ruling on 28 June, the parents' solicitor wrote to GOSH arguing that the hospital had a duty to apply for a new hearing because two other hospitals were willing to offer treatment: the Vatican-owned Bambino Gesù Hospital in Rome,[46] and Hirano's NewYork–Presbyterian Hospital. The letter said that Hirano had new basic research findings that he judged made it more likely that the nucleoside therapy could help.[30] On 6 July New York–Presbyterian Hospital issued a statement:

New York–Presbyterian Hospital and Columbia University Irving Medical Center have agreed to admit and evaluate Charlie, provided that arrangements are made to safely transfer him to our facility, legal hurdles are cleared, and we receive emergency approval from the FDA for an experimental treatment as appropriate. Alternatively, if approved by the FDA, we will arrange shipment of the experimental drug to Great Ormond Street Hospital and advise their medical staff on administering it if they are willing to do so.[47]

On 7 July, GOSH applied to the High Court for a fresh hearing after receiving letters from several international experts defending the potential of nucleoside therappy to treat Charlie's condition[48][49]. In a public statement, GOSH explained that: "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. " [50]. The hospital stated it was bound by the previous ruling of the High Court, which expressly forbid them from transferring Charlie for nucleoside therapy anywhere, and the application was made to ask the Court to reconsider the case after weighing the evidences regarding the treatment, and specifically, its ability to cross the blood-brain barrier to treat Charlie's encephalopathy.

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.[51] Hearings took place on 13 and 14 July. Hirano agreed to be identified in the latter hearing, and again testified from New York City. The judge ruled that Hirano should evaluate Charlie 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.[52][53] 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 Charlie's body there was no muscle left, and in other places muscle had been replaced with fat. The doctors and parents agreed that there was no longer any chance of the nucleoside treatment helping.[30]

Final care and death

On 24 July, the barrister representing Chris Gard and Connie Yates 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 Chris and Connie had made the decision on 21 July but had wanted to spend the weekend with their son without media attention.[54][55]

Charlie's parents wanted to move him to private care and wanted to wait a "week or so" before they ended mechanical ventilation.[56] 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 Charlie should be moved to a specialist children's hospice and mechanical ventilation withdrawn.[57] He was transferred to a hospice the same day.[58] The next day his mother announced at 6:30 pm that he had died.[7] The mechanical ventilator had been withdrawn; he was probably given morphine to relieve any pain beforehand, and died within minutes.[7]

Impact and legacy

Political and public policy

The case generated worldwide attention and controversy. Statements made by the Pope and Trump received wide publicity, and were criticised for raising false hopes about Charlie's prospects. The judge, and medical experts, criticised interventions by Hirano and others on the same grounds and for causing delays to the process.[12][59][60]

The fact that Charlie's parents raised £1.2 million via crowdfunding caused some foreign observers to suspect the decision to withdraw Charlie's life support was driven by cost. They were mistaken: money was never the issue. The High Court judge described arguments of commentators in the United States that Charlie's plight was the result of the UK having a state-run national health service as "nonsensical".[61]

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 Charlie "a prisoner of the state."[62][63] Anti-abortionist groups in the United States also became involved in the controversy, with US groups demonstrating outside the London court.[64]

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.[65][66] The parents issued a statement condemning harassment of GOSH staff and said they had also received abusive messages.[67]

On 24 July, GOSH released a statement criticising Hirano for offering testimony without having physically examined Charlie 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.[12][15][68][69] Hirano made a statement in response that he had relinquished his financial rights in the treatment.[12]

Experimental treatment

A key issue in Charlie's case was access to experimental treatment.[70] Patients and family often request access to experimental treatment when circumstances are dire.[71] The medical establishment handles these requests under "expanded access" or "compassionate use", which examines whether there is a reasonable chance of more benefit than harm for the patient; the extent of need; fairness; and the resources of everyone involved, including the people providing and administering the drug.[70][71] US insurance companies generally do not pay for experimental treatment,[70] but in Charlie's case, the medical team initially decided to try it. It would have been funded by the NHS.[8]:80-81

The question was whether it was in Charlie's best interests to receive nucleoside therapy—whether the benefits were likely to outweigh the harm.[25][26] Because the therapy was unproven, and had never been tested in a person with Charlie's condition, the GOSH medical team and the courts focused on whether it was plausible that there could be any benefit. They determined that the chances were vanishingly small, the effort would be futile and the treatment potentially painful for Charlie.[1][25][8]:17 Hospitals in the US make the same kind of plausibility analysis when they consider experimental treatment.[1] New York–Presbyterian Hospital would have needed approval to give Charlie the nucleoside therapy under the US compassionate-use framework.[72] Charlie's parents felt any chance to save his life was worth trying.[1][25]

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 that ended up in court.[73]

Medical ethics

During the court proceedings, ethical approaches to experimental treatment in the US and UK were compared.[25][26][1][2][3][4] When a patient cannot make decisions for themselves, case law in the US has tended to favour families' perception of what is in their best interests, so doctors in the US go to court less often when there are disagreements, but may find themselves providing care or treatment they believe is unethical. Some state law strongly favours families, but Texas, for example, allows doctors to bring cases to an ethics committee if they believe a treatment is futile, and they can be released from the obligation to provide such treatment.[25][26][note 2]

Medical ethicists saw the use of social media in this case as a challenge for the profession and for the field of medical ethics. Charlie's parents used social media to gain public support, but the medical team was limited in what it could say due to confidentiality obligations, and public opinion had no place in its decisions or procedures.[61][75][76]

See also

Notes

  1. ↑ Parental responsibilities are defined within the Children Act 1989 as "all the rights, duties, powers, responsibilities and authority which by law a parent of a child has in relation to the child and his property".[23]
  2. ↑ In the UK, judges are appointed by independent selection committees (there are no popular elections or political appointments of judges in the UK, unlike in the United States). Courts in the UK have no role in judicial review of legislation passed by parliament, so they are less involved in "political" matters than in the US.[74]

References

  1. 1 2 3 4 5 Robert D. Truog (20 July 2017). "The United Kingdom Sets Limits on Experimental Treatments: The Case of Charlie Gard", JAMA. doi: 10.1001/jama.2017.10410 PMID 28727879
  2. 1 2 Dominic Wilkinson (13 May 2017). "Beyond resources: denying parental requests for futile treatment", The Lancet, 389(10082), 1866–1867. doi:10.1016/S0140-6736(17)31205-9 PMID 28478971
  3. 1 2 Clare Dyer (4 July 2017). "Law, ethics, and emotion: the Charlie Gard case", BMJ, 358:j3152. doi:10.1136/bmj.j3152 PMID 28676496
  4. 1 2 Wilkinson, Dominic, et al. (2017). "The Charlie Gard Case: British and American approaches to court resolution of disputes over medical decisions", Journal of Perinatology, courtesy of academia.edu.
  5. ↑ Garrison, Cassandra (27 July 2017). "#CharlieGard: social media turns family tragedy into global war of words". Reuters. Retrieved 23 July 2017.
  6. 1 2 3 4 Bever, Lindsey (28 July 2017). "‘Our beautiful little boy has gone’: Parents of Charlie Gard say he has died". The Washington Post. Retrieved 1 August 2017.
  7. 1 2 3 Mendick, Robert (28 July 2017). "Charlie Gard: The tragic case of a too short life". The Telegraph.
  8. 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Mr Justice Francis
    (In Public) (11 April 2017), Great Ormond Street Hospital v Yates & Ors [2017] EWHC 972 (Fam), retrieved 2 July 2017
  9. 1 2 El-Hattab, Ayman W.; Scaglia, Fernando (2013). "Mitochondrial DNA Depletion Syndromes: Review and Updates of Genetic Basis, Manifestations, and Therapeutic Options". Neurotherapeutics. 10 (2): 186–198. ISSN 1933-7213. PMC 3625391 Freely accessible. PMID 23385875. doi:10.1007/s13311-013-0177-6.
  10. ↑ "RRM2B-related mitochondrial DNA depletion syndrome, encephalomyopathic form with renal tubulopathy". United States National Library of Medicine. Retrieved 12 July 2017.
  11. ↑ Viscomi, Carlo; Bottani, Emanuela; Zeviani, Massimo (2015). "Emerging concepts in the therapy of mitochondrial disease". Biochimica et Biophysica Acta (BBA) – Bioenergetics. 1847 (6): 544–557. doi:10.1016/j.bbabio.2015.03.001.
  12. 1 2 3 4 Boseley, Sarah (25 July 2017). "US doctor's intervention in Charlie Gard case 'raises ethical questions'". The Guardian.
  13. ↑ "Michio Hirano, MD". Neurological Institute of New York at Columbia University. Retrieved 25 July 2017.
  14. ↑ Quinn, Dave (14 July 2017). "Michio Hirano: What to Know About the Doctor Treating Terminally Ill Baby Charlie Gard". People (magazine). Retrieved 1 August 2017.
  15. 1 2 "Latest statement on GOSH patient Charlie Gard". Great Ormond Street Hospital. 24 July 2017.
  16. ↑ Dyer, Clare (4 July 2017). "Feature. Law, ethics, and emotion: the Charlie Gard case". BMJ. 358: j3152. doi:10.1136/bmj.j3152. (Subscription required (help)).
  17. ↑ Bilefsky, Dan; Chan, Sewell (4 July 2017). "For Parents of U.K. Infant, Trump’s Tweet Is Latest Twist in an Agonizing Journey". The New York Times. Retrieved 1 August 2017.
  18. ↑ Hartley-Parkinson, Richard (21 March 2017). "Fund for sick baby reaches £400,000 – but another £800,000 is needed". Metro. Retrieved 30 July 2017.
  19. ↑ "Judge to start analysing evidence as appeal for baby Charlie Gard hits £1.2 million". ITV News. 2 April 2017. Retrieved 13 July 2017.
  20. ↑ "A £27,000 donation to fund to send sick Charlie Gard to US for treatment". Yorkshire Evening Post. 27 April 2017. Retrieved 13 July 2017.
  21. ↑ "Press summary: Great Ormond Street Hospital for Children -v- Gard" (PDF).
  22. ↑ "Wardship".
  23. ↑ "Children Act 1989".
  24. ↑ "NHS Choices".
  25. 1 2 3 4 5 6 "Reality Check: Why don't Charlie Gard's parents have the final say?". BBC News. 14 July 2017.
  26. 1 2 3 4 CNN, Susan Scutti (6 July 2017). "Could Charlie Gard's case happen in the US?". CNN.
  27. ↑ Keegan, Leslie (4 October 2011). "Withdrawal of medical treatment". The Law Gazette. Retrieved 31 July 2017.
  28. 1 2 Grierson, Jamie; Addley, Esther; Bowcott, Owen (12 April 2017). "Charlie Gard's parents have three weeks to challenge life support ruling". The Guardian. Retrieved 30 July 2017.
  29. 1 2 Fouzder, Monidipa (11 April 2017). "Baby's parents 'struggling to understand' life support ruling". The Law Gazette. Retrieved 10 July 2017.
  30. 1 2 3 Mr Justice Francis (24 July 2017). "Approved Judgement" (PDF).
  31. ↑ "Charlie Gard's parents angry that baby's lawyer is head of charity that backs assisted dying". The Telegraph. 16 July 2017.
  32. ↑ Larcher, V; Craig, F; Bhogal, K; Wilkinson, D; Brierley, J; Royal College of Paediatrics and Child, Health. (May 2015). "Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice.". Archives of disease in childhood. 100 Suppl 2: s3–23. PMID 25802250.
  33. ↑ McLean, Paul C. (25 July 2017). "Medical Ethics: In The Charlie Gard Case, Listen To The Nurses". www.wbur.org.
  34. ↑ Davies, Caroline (11 April 2017). "Parents fighting to keep baby alive lose high court battle". The Guardian.
  35. ↑ Yates & Anor v Great Ormond Street Hospital For Children NHS Foundation Trust & Anor (Rev 1) [2017] EWCA Civ 410, 23 May 2017, retrieved 2 July 2017
  36. ↑ Bowcott, Owen (8 June 2017). "Charlie Gard's parents make emergency appeal to European judges". The Guardian. Retrieved 19 July 2017.
  37. ↑ Bowcott, Owen (27 June 2017). "Charlie Gard: European court rejects plea to intervene in life-support fight". The Guardian. Retrieved 19 July 2017.
  38. ↑ "Charlie Gard: Life support to be turned off, parents say". BBC News. 30 June 2017.
  39. ↑ Boyle, Danny (30 June 2017). "Charlie Gard's parents endure 'worst day of our lives' as doctors to switch off baby's life support within hours". The Daily Telegraph. Retrieved 7 July 2017.
  40. ↑ Siddique, Haroon (30 June 2017). "Charlie Gard's parents given more time before life support is turned off". The Guardian.
  41. 1 2 "Pope considers 'giving Charlie Gard a Vatican passport' to overcome rulings preventing treatment in Italy". The Daily Telegraph. 7 July 2017. Retrieved 10 July 2017.
  42. 1 2 Mendick, Robert (11 July 2017). "Hospitals refuse to take Charlie Gard as relations between his parents and Great Ormond Street plummet". The Telegraph. Retrieved 3 August 2017.
  43. ↑ Revesz, Rachael (9 July 2017). "Charlie Gard: US congressmen want to make sick baby an American citizen so he can receive treatment abroad". The Independent. Retrieved 10 July 2017.
  44. 1 2 Kishore, Divya (3 July 2017). "Pope Francis says wishes of brain-damaged baby Charlie Gard's parents should be respected". International Business Times UK. Retrieved 1 August 2017.
  45. ↑ Mendick, Robert (11 July 2017). "Charlie Gard's parents given 48-hour deadline". The Daily Telegraph.
  46. ↑ Bourdin, Anita (3 July 2017). "Rome's Bambino Gesù Hospital Is Ready to Receive Charlie Gard – ZENIT – English". Zenit News Agency.
  47. ↑ "New York hospital agrees to admit Charlie Gard", CBS News, 6 July 2017.
  48. ↑ Boseley, Sarah (2017-07-07). "Charlie Gard hospital applies to high court for fresh hearing". The Guardian. ISSN 0261-3077. Retrieved 2017-08-10.
  49. ↑ "A new chance for Charlie Gard: doctors say new drug could help him". Mail Online. Retrieved 2017-08-10.
  50. ↑ "Latest statement on Charlie Gard". Retrieved 2017-08-10.
  51. ↑ Forster, Katie (10 July 2017). "Charlie Gard: Parents to present fresh evidence for sick baby to receive experimental treatment". The Independent. Retrieved 10 July 2017.
  52. ↑ "Charlie Gard: US doctor offers to meet GOSH medical team". BBC News. 14 July 2017.
  53. ↑ "US specialist to examine Charlie Gard next week, judge told". The Daily Telegraph. 14 July 2017. Retrieved 16 July 2017.
  54. ↑ "Charlie Gard parents end legal fight to take baby to US". BBC News. 24 July 2017. Retrieved 24 July 2017.
  55. ↑ Siddique, Haroon (24 July 2017). "Charlie Gard: parents end legal fight over critically ill baby". The Guardian.
  56. ↑ Cambridge, Ellie; Fruen, Lauren; Kamouni, Sara (28 July 2017). "Charlie Gard’s mum says she's had 'no control over son's life or death' as judge rules tot will die in hospice denying parents their 'final wish'". The Sun.
  57. ↑ "Charlie Gard hospice move approved". BBC News. 27 July 2017. Retrieved 27 July 2017.
  58. ↑ "Charlie Gard has died, his parents say". The Guardian. 28 July 2017.
  59. ↑ "Would Charlie Gard really have survived if he’d been treated sooner? Here’s the sad truth". The Independent. 26 July 2017. Retrieved 30 July 2017. Dr Hirano had never physically assessed Charlie nor had he had sight of his medical records and investigations, including the second opinions of doctors from outside GOSH.
  60. ↑ "Charlie Gard: Boris Johnson says baby cannot be moved to Vatican". BBC. 5 July 2017. Retrieved 30 July 2017. Renowned scientist and genetics expert Robert Winston ... said "interferences from the Vatican and from Donald Trump" were "extremely unhelpful and very cruel". Lord Winston added: "This child has been dealt with at a hospital which has huge expertise in mitochondrial disease and is being offered a break in a hospital that has never published anything on this disease, as far as I'm aware."
  61. 1 2 "The tragic case of Charlie Gard". BBC News. 28 July 2017. Retrieved 30 July 2017.
  62. ↑ Mostrous, Alexi (29 July 2017). "Charlie Gard: publicity that was not always in the family’s interests". Times of London.
  63. ↑ Dixon, Hayley (23 July 2017). "Charlie Gard's parents 'extremely upset' by public backlash". The Telegraph.
  64. ↑ Glenza, Jessica (26 July 2017). "How Charlie Gard captured Trump's attention and animated pro-life groups". The Guardian. ISSN 0261-3077. Retrieved 30 July 2017.
  65. ↑ "Statement from Mary MacLeod, Chairman of Great Ormond Street Hospital" (Press release). Great Ormond Street Hospital. 22 July 2017. Retrieved 22 July 2017.
  66. ↑ "Charlie Gard: Death threats sent to Great Ormond Street staff". BBC News. 22 July 2017. Retrieved 22 July 2017.
  67. ↑ "Charlie Gard: Parents face 'backlash' over hospital threats". BBC News. 23 July 2017. Retrieved 25 July 2017.
  68. ↑ "Charlie Gard: Professor who offered to help baby has 'financial interest' in drug he was treating him with, says GOSH". The Independent. 25 July 2017. Retrieved 30 July 2017.
  69. ↑ "Would Charlie Gard really have survived if he’d been treated sooner? Here’s the sad truth". The Independent. 26 July 2017. Retrieved 30 July 2017. Dr Hirano had never physically assessed Charlie nor had he had sight of his medical records and investigations, including the second opinions of doctors from outside GOSH.
  70. 1 2 3 Dauber, Michael S. (26 July 2017). "Charlie Gard, Compassionate Use, and Single-Payer Health Care - The Hastings Center". The Hastings Center.
  71. 1 2 Caplan, AL; Ray, A (8 March 2016). "The Ethical Challenges of Compassionate Use.". JAMA. 315 (10): 979–80. PMID 26868205. doi:10.1001/jama.2016.0416.
  72. ↑ Begley, Sharon (6 July 2017). "New York hospital offers to admit Charlie Gard, baby at center of life-and-death legal fight". STAT.
  73. ↑ Bilefsky, Dan (7 August 2017). "For Parents of Children Like Charlie Gard, Learning to ‘Redefine Hope’". The New York Times. Retrieved 8 August 2017.
  74. ↑ "Supreme Courts: the US and UK compared". The Journal of the Law Society of Scotland. 16 February 2015.
  75. ↑ Associated Press (29 July 2017). "British baby Charlie Gard dies after legal battle over experimental treatment for rare genetic disease". The Japan Times Online.
  76. ↑ Triggle, Nick (29 July 2017). "Charlie Gard: A case that changed everything?". BBC News.

Judgments

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