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Charlie Gard

summer 2017

From triple helix - summer 2017 - Charlie Gard

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Care and compassion in every situation

Charlie Gard was born in August last year and, after becoming unwell at eight-weeks-old, was diagnosed with MDDS (infantile onset encephalomyopathic mitochondrial DNA depletion syndrome), a rare and severe mitochondrial depletion disease. His condition is characterised by congenital deafness, severe epilepsy disorder and severe muscle weakness. His heart, liver and kidneys have also been affected and he is ventilator dependent. At the time of writing, Charlie is ventilated in intensive care at Great Ormond Street Hospital (GOSH). 1

In February GOSH applied to the High Court, asking for an order stating that it would be 'lawful and in Charlie Gard's best interest' for artificial ventilation to be withdrawn. They additionally said that nucleoside therapy was not in Charlie's best interest but suggested the provision of palliative care. 2

Clinicians had initially planned to administer nucleoside therapy in the UK but Charlie started suffering from brain seizures and was diagnosed with epileptic encephalopathy. Subsequently, nucleoside therapy was deemed to be 'futile' if undertaken. Chris Gard and Connie Yates, Charlie's parents, opposed this application as they wished to travel to the US for experimental nucleoside treatment, which has never been tested on anyone with Charlie's form of MDDS or animal models. Through crowdfunding,they have raised £1.3 million for treatment and found a clinician willing to do it. 3 Dr I, the neurologist in the US, would like to 'offer what we can', and argues that although 'it is unlikely to be of any benefit to Charlie's brain' he said the probability is 'low but not zero'. 2 Mr Justice Francis ruled in favour of GOSH.

Since the ruling, Charlie's parents have launched several legal challenges in the court of appeal and the Supreme Court, in addition to the latest challenge in the European Court of Human Rights (ECHR). On 27 June the ECHR refused to intervene in the case of Charlie Gard. 4

Balancing treatment and withdrawal decisions, and acting in the best interests of children with complex medical histories, is extremely difficult and emotive for all involved. 5 As Christian healthcare professionals, regardless of legal decisions surrounding our patients' treatment, we must 'cloth ourselves with compassion' 6 for all those involved, our conversations should 'always be full of grace and seasoned with salt'. 7 Regardless of whether treatment is continued or withheld, caring must never stop - not only for a child, but also for their parents. We must also not forget that all human life is valuable regardless of severity of disability or prognosis.

Review by Rachel Owusu-Ankomah CMF Head of Student Ministries


references

1. NHS Foundation Trust. Frequently asked questions about the Charlie Gard court case. Great Ormond Street Hospital bit.ly/2sUHiQ5

2. Great Ormond Street Hospital and Constance Yates, Chris Gard, Charles Gard. EWHC 972; 11 April 2017 bit.ly/2un570Z

3. Charlie Gard #charliesfight. Gofundme bit.ly/2u21Apa4. Charles GARD and Others against the United Kingdom: Decision. ECHR; 27 June 2017 bit.ly/2skrwPY

5. Wyatt J. Neonatal ethics. CMF Files 2004;47 bit.ly/2u2aIdD

6. Colossians 3:12

7. Colossians 4:6

Article written by Rachel Owusu-Ankomah

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