Charlie Gard case

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Charlie Gard (born 4 August 2016) is a British boy with a rare genetic condition known as mitochondrial DNA depletion syndrome. While receiving treatment at Great Ormond Street Hospital, decisions about his care were taken to various law courts, where a ruling was made that the hospital could lawfully withdraw all treatment save for palliative care. This went against the wishes of his parents, Chris Gard and Connie Yates from Bedfont, London. They campaigned to keep him alive on life support and travel to the United States for experimental treatment despite doctors and judges saying it would not help and would cause him "significant harm".[1] On 24 July 2017, the parents ended their legal challenge.

Medical background

Charlie Gard was born on 4 August 2016 to Chris Gard and Connie Yates of Bedfont, London. He initially began developing normally, but by early October his parents brought him to their general practitioner (GP) 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. The diagnosis of a mitochondrial DNA depletion syndrome (MDDS) was suspected by the end of October and was confirmed by a genetic test in mid-November that found he had two mutated versions of the gene coding for the RRM2B protein. The RRM2B gene is located in the cell nucleus but the protein for which it codes affects DNA in mitochondria. By mid-December, he began having persistent seizures as his brain function deteriorated, he had become deaf, and he had no ability to breathe or move or open his eyes on his own. His heart and kidneys were starting to fail as well, and it was not clear if he could experience pain or not.[2]

The MDDS associated with RR2MB mutations causes early onset encephalopathy, muscle weakness (including muscles used to breathe), and organ failure, and leads to death during infancy.[3] It has autosomal recessive inheritance. Although the exact prevalence of this type of MDDS is unknown due to its rarity, at least 15 other cases have been recorded in medical literature.[4] 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.[2][3][5]

By January 2017, the parents and medical team had decided to attempt an experimental therapy with nucleosides (the precursors of DNA that the child's mitochondria cannot synthesise), but while the medical team was in the process of applying for ethical approval to do so, the child had a further round of severe seizures. Due to the development of likely severe epileptic encephalopathy secondary to these, doctors withdrew their support for attempting the experimental therapy as they felt that it would not be in his best interests, and began discussions with the parents about withdrawing life support and providing palliative care.[2]

Litigation

On 24 February 2017, the hospital applied for mechanical ventilation to be withdrawn, but his parents Gard and Yates were opposed to this, and wanted to take the child to the United States for an experimental treatment. The case was heard at the High Court with a legal team representing the parents pro bono.[6] The infant was joined as a party to the litigation by the judge, and his interests were represented by a court-appointed guardian, represented by independent counsel; in court the guardian contended that due to the risk that the infant was experiencing any pain at all, and the low possibility that the treatment would work, it was in the child's best interests for mechanical ventilation to be withdrawn.[2] On 11 April, Mr Justice Francis ruled that it was in the infant's best interests for his treating clinicians to withdraw mechanical ventilation and provide him with palliative care only, maintaining his dignity.[2][6][7] The judge noted that the American doctor proposing the nucleoside treatment said that it was "very unlikely that he will improve" with the proposed experimental therapy. He also noted that the treatment proposed had not been used in patients with the same mutation as Charlie Gard, nor with patients with encephalopathy, as he had. There have been no published case studies of the proposed treatment in any patient group.[2] It was later disclosed that the American doctor had financial interests in the treatment.[8]

The Court of Appeal, on 25 May, refused to overturn the decision of the lower court in its ruling.[9] 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.[10] A final appeal was made to the European Court of Human Rights by Gard and Yates. This was also rejected.[11] In June, Gard and Yates said that they wanted to take him 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 later announced that his life support would be withdrawn on 30 June.[12][13] On 30 June, the staff at the hospital agreed to give Gard and Yates more time with him.[14]

On 7 July, the hospital applied to the High Court for a fresh hearing, citing that this was "in light of claims of new evidence relating to potential treatment", referring to possible new evidence on the benefit of nucleoside treatment.[15] 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.[16]

Hearings took place on 13 and 14 July, and in the latter hearing the American doctor, Michio Hirano, a professor of neurology at Columbia University and specialist in mitochondrial diseases,[17] agreed to be identified, and the judge ruled that Hirano could 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.[18][19]

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 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.[20][21]

Further reactions

At the end of January 2017, the parents launched an appeal on a crowdfunding website GoFundMe, seeking £1.2million to finance experimental treatment in the US. Just over two months later, their target was achieved.[22] By the end of April, before the appeal had run for three months, the total amount donated exceeded £1.3 million.[23]

In the first two weeks of July 2017, offers of assistance were made by the Vatican-owned Bambino Gesù Hospital in Rome, Italy,[24] Pope Francis,[25] US President Donald Trump,[25] and two Republican US congressmen.[26]

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 to investigate the abuse.[27][28] Gard and Yates issued a statement condemning harassment of GOSH staff and said they had also received abusive messages.[29]

See also

References

  1. Jamieson, Sophie (27 June 2017). "Charlie Gard's life support will be removed after his parents lose their final appeal". The Daily Telegraph. Retrieved 7 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  2. 2.0 2.1 2.2 2.3 2.4 2.5 Mr. Justice Francis
    (In Public) (11 April 2017), Great Ormond Street Hospital v Yates & Ors [2017] EWHC 972 (Fam), retrieved 2 July 2017
    <templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  3. 3.0 3.1 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. doi:10.1007/s13311-013-0177-6. ISSN 1933-7213. PMC 3625391. PMID 23385875.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  4. "RRM2B-related mitochondrial DNA depletion syndrome, encephalomyopathic form with renal tubulopathy". United States National Library of Medicine. Retrieved 12 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  5. 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.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  6. 6.0 6.1 Fouzder, Monidipa (11 April 2017). "Baby's parents 'struggling to understand' life support ruling". The Law Gazette. Retrieved 10 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  7. Davies, Caroline (11 April 2017). "Parents fighting to keep baby alive lose high court battle". The Guardian.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  8. "Latest statement on GOSH patient Charlie Gard". p. 4. Retrieved 24 July 2017. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  9. 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<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  10. Bowcott, Owen (8 June 2017). "Charlie Gard's parents make emergency appeal to European judges". The Guardian. Retrieved 19 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  11. Bowcott, Owen (27 June 2017). "Charlie Gard: European court rejects plea to intervene in life-support fight". The Guardian. Retrieved 19 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  12. "Charlie Gard: Life support to be turned off, parents say". BBC News. 30 June 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  13. 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.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  14. Siddique, Haroon (30 June 2017). "Charlie Gard's parents given more time before life support is turned off". The Guardian.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  15. Boseley, Sarah (7 July 2017). "Charlie Gard hospital applies to high court for fresh hearing". The Guardian. Retrieved 10 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  16. 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.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  17. "Michio Hirano, MD". Neurological Institute of New York at Columbia University. Retrieved 25 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  18. "Charlie Gard: US doctor offers to meet GOSH medical team". BBC News. 14 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  19. "US specialist to examine Charlie Gard next week, judge told". The Daily Telegraph. 14 July 2017. Retrieved 16 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  20. "Charlie Gard parents end legal fight to take baby to US". BBC News. 24 July 2017. Retrieved 24 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  21. Siddique, Haroon (24 July 2017). "Charlie Gard: parents end legal fight over critically ill baby". The Guardian.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  22. "Judge to start analysing evidence as appeal for baby Charlie Gard hits £1.2 million". ITV News. 2 April 2017. Retrieved 13 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  23. "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.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  24. Bourdin, Anita (3 July 2017). "Rome's Bambino Gesù Hospital Is Ready to Receive Charlie Gard – ZENIT – English". Zenit News Agency.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  25. 25.0 25.1 "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.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  26. 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.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  27. "Statement from Mary MacLeod, Chairman of Great Ormond Street Hospital" (Press release). Great Ormond Street Hospital. 22 July 2017. Retrieved 22 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  28. "Charlie Gard: Death threats sent to Great Ormond Street staff". BBC News. 22 July 2017. Retrieved 22 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>
  29. "Charlie Gard: Parents face 'backlash' over hospital threats". BBC News. 23 July 2017. Retrieved 25 July 2017.<templatestyles src="Module:Citation/CS1/styles.css"></templatestyles>

External links