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The Fertility Show


 

UK parents lose appeal to take sick son to US for treatment

30 May 2017

By Jennifer Willows

Appeared in BioNews 902

The UK Court of Appeal has upheld the High Court's decision that an experimental treatment offered by a US doctor will not benefit ill baby Charlie Gard, and could cause significant pain and distress.

The case was originally brought before Mr Justice Francis because the baby's doctors at Great Ormond Street Hospital disagreed with his parents' wish to take him to the US for the experimental treatment.

Nine-month-old Charlie Gard has mitochondrial DNA depletion syndrome (MDDS) in its most severe form: infant onset RRM2B deficiency. The disease affects his mitochondria, although the faulty gene that causes it is found in his nuclear DNA, and not in the mitochondria themselves.

The result is impairment to his brain – including epilepsy – and his muscles; he has irreversible brain damage and cannot see, hear, or move. He is fed by tube and requires a ventilator to breathe.

Doctors at Great Ormond Street have done everything they can, according to a statement from the hospital. They believe that taking the baby off ventilation is now in his best interests. His parents want to 'exhaust all possible options' and have been in contact with the US doctor, and raised over £1.3 million of donations to pay for travel and treatment.

The therapy has never been used in a RRM2B patient, and has not been tested in mice for this variant, although it has shown some promise in other forms of MDDS. The US doctor admits that the treatment has never been used in a patient with encephalopathy, and given the child's brain damage it is 'very unlikely that he will improve'.

Because the child cannot move or make sounds it is impossible to know if he feels pain.

As well as lawyers for the parents and Great Ormond Street, a third lawyer represented the baby's Guardian: a professional appointed by The Children and Family Court Advisory and Support Service (Cafcass) whose role is to be independent of other parties and promote the child's interests.

One of a panel of three appeal judges, Lord Justice McFarlane explained that the High Court's decision had been correctly based on 'the core evidence' and that travelling to the US for treatment 'would expose Charlie to harm'.

The child's parents have expressed their intention to take their case to the Supreme Court.

SOURCES & REFERENCES
The Guardian | 25 May 2017
 
BBC | 26 May 2017
 
Great Ormond Street Hospital | 25 May 2017
 
England and Wales High Court of Justice (Family Division) | 11 April 2017
 

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