Explainer: What you should know about the Charlie Gard treatment controversy

Charlie Gard is an eleventh-month-old British infant who, a month after he was born, was diagnosed with mitochondrial DNA depletion syndrome (MDDS), a rare genetic disease.

Charlie’s parents sought to bring him to the United States for experimental treatment, but several European courts have blocked their decision and sided with doctors who say that switching to palliative end-of-life care is in the best interest of the child.

 

What just happened?

The case of Charlie Gard, a terminally ill infant in England, has raised questions around the world about whether the state has the right to block parental rights to prevent further suffering of a child.

Charlie’s parents sought to bring him to the United States for experimental treatment, but several European courts have blocked their decision and sided with doctors who say that switching to palliative end-of-life care is in the best interest of the child.

Who is Charlie Gard?

Charlie Gard is an eleventh-month-old British infant who, a month after he was born, was diagnosed with mitochondrial DNA depletion syndrome (MDDS), a genetic disease so rare that it is believed to have been diagnosed in only 16 children in the world. The condition causes a progressive weakening of the muscles and brain damage.

Charlie’s parents are Chris, a postman, and Connie, of Bedfont, west London.

What is mitochondrial DNA depletion syndrome?

Mitochondrial DNA depletion syndrome is a genetic disease that affects the DNA that converts chemical energy from food into a form that cells can use. The effect of the disease is that cells in affected tissues and organs are unable to create the energy they need to function.

As in Charlie’s case, the disease can affect the tissue of the brain, causing irreversible damage. Treatment is usually performed to manage the symptoms, with life expectancy from onset of symptoms ranging from 3 months to 12 years.

Why weren’t the parents allowed to make the decision about their child’s treatment?

When the Great Ormond Street Hospital for Children NHS Foundation Trust, the hospital where Charlie was being cared for, refused to provide additional treatment, the Gard’s filed a lawsuit to allow their son to be taken to the United States for an experimental procedure called nucleoside therapy.

At a hearing of the Family Division of the High Court in April, the judge ruled that it was in “Charlie’s best interests for artificial ventilation to be withdrawn” for the child’s treating clinicians to “provide him with palliative care only” and for the infant “not to undergo nucleoside therapy.”

“Some people may ask why the court has any function in this process; why can the parents not make this decision on their own?” said Justice Francis in his ruling. “The answer is that, although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests. The Great Ormond Street Hospital has made an application and it is my duty to rule on it, given that the parents and the hospital cannot agree on the best way forward.”

The parent’s appealed to both the UK Supreme Court and the European Court of Human Rights, both of which refused to overturn the decision. Life support for Charlie was originally scheduled to be withdrawn on June 30, but his parents have been given a few more days to say goodbye to their son.

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Read another article on this topic: Je Suis Charlie, Once More

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