Charlie Gard treatment controversy
Charlie Gard (born 4 August 2016) is a British boy with a rare genetic condition known as mitochondrial DNA depletion syndrome (MDDS).[1][2] While receiving treatment at Great Ormond Street Hospital for Children decisions about his care were taken to the law courts, where a ruling that the hospital could lawfully withdraw all treatment save for palliative care went against the parents' hopes.[3] His parents, Chris Gard and Connie Yates from Bedfont, London, campaigned to keep him alive on life support and travel to the United States for experimental treatment despite doctors and judges saying it would cause him "significant harm".[4] A further full-day hearing at the High Court is scheduled for Thursday 13 July.
Medical background[edit]
Charlie Gard was born in August 2016 and began developing normally, but by early October his parents brought him to the doctor because he was not gaining weight. By mid-October he was hospitalized at Great Ormond Street Hospital and put on a mechanical ventilator because he began having trouble breathing. The diagnosis of mitochondrial DNA depletion syndrome (MDDS) was suspected by the end of October and was confirmed by a genetic test in mid-November. MDDS is caused by mutation that causes mitochondria to stop functioning; no cell can function without its 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. MDDS is progressive, meaning that the child's body would continue to fail; as of 2017 there were no proven treatments for MDDS. It was not clear if the child could experience pain or not. [5]
By January 2017 the parents and medical team had decided to attempt an experimental therapy, 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, and the hospital withdrew its support for attempting treatment, and began discussions with the parents about withdrawing life support and providing palliative care.[5]
Legal background[edit]
On 24 February 2017, the hospital applied for mechanical ventilation to be withdrawn, however his parents Gard and Yates were opposed to this, and wanted to bring the child to the United States for an experimental treatment.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.[3] On 11 April 2017 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.[3][5] The Court of Appeal, on 25 May 2017, refused to overturn the decision of the lower court in its ruling.[6]
The case was further discussed by the UK Supreme Court which agreed with the previous rulings. A final legal appeal was made to the European Court of Human Rights by Gard and Yates. This was also rejected. In June 2017, the request of Gard and Yates to take him home to die was denied by the hospital, on the basis that continuing specialist monitoring and medication would be necessary to minimise the child's suffering. It was later announced that his life support would be withdrawn on 30 June.[7] On 30 June 2017, the staff at Great Ormond Street agreed to give Gard and Yates more time with him.[8]
On 7 July Great Ormond Street 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".[9] On 10 July, at a preliminary hearing, Justice Francis made plans around a further full-day hearing on Thursday 13 July, asking the parents to set out any new evidence they had on the day before. Justice Francis also indicated that he might not reach a final decision at the Thursday hearing and the possibility of the case running on into the following day was not ruled out.[10]
Further reactions[edit]
In the first two weeks of July 2017 offers of assistance and/or support were made by the Vatican-owned Bambino Gesu Hospital in Rome, Italy,[11] Pope Francis,[12] United States President Donald Trump,[12] and two United States congressmen.[13]
See also[edit]
References[edit]
- ↑ 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.
- ↑ Davies, Caroline (11 April 2017). "Parents fighting to keep baby alive lose high court battle". The Guardian.
- ↑ 3.0 3.1 3.2 Fouzder, Monidipa (11 April 2017). "Baby's parents 'struggling to understand' life support ruling". The Law Gazette. Retrieved 10 July 2017.
- ↑ 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.
- ↑ 5.0 5.1 5.2 MR. JUSTICE FRANCIS
(In Public) (11 April 2017), Great Ormond Street Hospital v Yates & Ors [2017] EWHC 972 (Fam), retrieved 2 July 2017 - ↑ 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
- ↑ "Charlie Gard: Life support to be turned off, parents say". 30 June 2017 – via bbc.co.uk.
- ↑ Siddique, Haroon (30 June 2017). "Charlie Gard's parents given more time before life support is turned off". The Guardian.
- ↑ Boseley, Sarah (7 July 2017). "Charlie Gard hospital applies to high court for fresh hearing". The Guardian. Retrieved 10 July 2017.
- ↑ 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.
- ↑ Bourdin, Anita (3 July 2017). "Rome's Bambino Gesù Hospital Is Ready to Receive Charlie Gard – ZENIT – English". Zenit.
- ↑ 12.0 12.1 Telegraph reporters (7 July 2017). "Pope considers 'giving Charlie Gard a Vatican passport' to overcome rulings preventing treatment in Italy". The Daily Telegraph. Retrieved 10 July 2017.
- ↑ Rachael Revesz (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.
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