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High Court rules against parents of child with rare genetic illness; a dangerous precedent?

A High Court ruling refusing higher care for a boy with a rare genetic illness has galvanised opinions nationwide.   Even Eammon Holmes and Nick Ferrari are at odds. On Wednesday,  Justice Francis of the Family Division of the High Court ruled in favour of Great Ormond Street doctors who wanted all but palliative treatment to be withdrawn from 8 month old Charlie Gard. This was against the wishes of his parents, Connie Yates and Chris Gard, who sought to take him to receive further therapy in the US after crowdfunding nearly £1.3 million.

Severe Brain Damage

Charlie was born with mitochondrial depletion syndrome, a rare genetic disorder where tissues lose mitochondrial DNA, the cell components which enable cellular metabolism. Without them, the affected tissue will slowly die. In Charlie’s case, he has suffered severe brain damage as a result of this, meaning that he is unresponsive, unable to move and totally dependent on a machine to assist his breathing. Most of those affected by Charlie’s variant of the syndrome will not survive infancy, although there are a few who have survived into adulthood. The disease is irreversible, progressive and incurable with some treatments showing a reduction in symptoms.

Life Support would only ‘Prolong suffering’

The doctors in charge of the child’s care at Great Ormond Street Hospital wished to remove life support treatment as it  would only prolong his suffering. They added that the treatment offered in the USA is experimental and would not improve his quality of life.  This was agreed by the team who would be potentially treating Charlie across the Atlantic. They highlight that the proposed nucleoside therapy is not curative and the possibility remains that Charlie might not be well enough to be transferred to intensive care in the US.

A difficult decision

The case is undoubtedly tragic and has provoked many into considering where they stand on this type of issue; at what point do we let go? Anne Perkins writing for the Guardian felt that the best interests of the child should come first, but what does this hackneyed phrase mean? Could the best interests of Charlie Gard be to prolong his life for as long as possible without thought to his suffering which would be equally metered out? Or does it mean that we recognise the limits of modern medicine and the human body and allow a baby in constant pain and with no quality of life to die with dignity (another word which is well tossed around when it comes to this type of ethical debate)? Is it about the parents who want a few months more to spend with a son with whom they have had precious little time already? Wherever you stand, its important to remember that both parties felt that they were acting in the best interests of the child.

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Photo sourced from pixabay.com

Sources and further reading

https://www.theguardian.com/commentisfree/2017/apr/12/charlie-gard-legal-aid

http://www.express.co.uk/showbiz/tv-radio/790989/Charlie-Gard-case-Eamonn-Holmes-Nick-Ferrari-life-support-ITV-This-Morning

http://www.bbc.co.uk/news/uk-england-london-39528941

http://www.bbc.co.uk/news/uk-england-london-39503958

http://www.lbc.co.uk/radio/presenters/nick-ferrari/nick-ferraris-personal-reason-baby-charlie-gard/

https://www.thesun.co.uk/news/3248426/charlie-gard-gofundme-mitochondrial-depletion-syndrome-court-ruling/

 

Any opinions above are the author’s alone and may not represent those of his/her affiliations. Any comment is based on the best available evidence at the time of writing.  All data is based on externally validated studies unless expressed otherwise. Novel data is representative of the sample surveyed. Online recommendation is no substitute for seeing your own doctor and should not be taken as medical advice.

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