BLOGThe Weekly Digest: What You Need To Know About Charlie Gard

By James Arnold Posted on: | July 12, 2017
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On to the news.

 

What You Need To Know About Charlie Gard

 

The news has been filled with discussion about Charlie Gard, the infant in England whose parents wish to transport him to the U.S. for experimental treatment.

Here's what you need to know.

First, the background on Charlie Gard himself, per Joe Carter at The Gospel Coalition:

Charlie Gard is an 11-month-old British infant who, a month after he was born, was diagnosed with mitochondrial DNA depletion syndrome (MDDS), a genetic disease so rare it’s believed to have been diagnosed in only 16 children in the world. The condition causes brain damage and a progressive weakening of the muscles.

According to the hospital treating the infant, Charlie’s brain, muscles, and ability to breathe are all severely affected by the disease. In addition, he has congenital deafness and a severe epilepsy disorder. His heart, liver, and kidneys are also affected, but not severely. The hospital notes Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided. No one can be certain whether or not Charlie feels pain.

One of the world’s leading experts with a special interest in mitochondrial diseases has concluded Charlie has the most severe form of infantile onset RRM2B deficiency.

Charlie’s parents are Chris and Connie of Bedfont in West London.

The controversy arose when Charlie's parents decided that they wished to take little Charlie to the U.S. for an experimental treatment. The doctors refused to release Charlie from their care, citing what nearly everybody agrees about: The treatment is extremely unlikely to improve Charlie's condition.

Charlie's parents filed suit. More from Carter:

At a hearing of the Family Division of the High Court in April, the judge ruled it was in “Charlie’s best interests for artificial ventilation to be withdrawn,” for the child’s treating clinicians to “provide him with palliative care only,” and for the infant “not to undergo nucleoside therapy.”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 core of the disagreement between the doctors and the parents is not, as some have suggested, a question about the potential treatment. It is actually about the nature of Charlie's condition: The parents do not believe that Charlie has irreversible brain damage while the hospital does.

Justice Francis agreed to hear new evidence, which he will do in a hearing scheduled for tomorrow.

A number of groups have rallied behind Charlie Gard, including many pro-life organizations. Both President Trump and Pope Francis offered support.

The ethical issues are numerous. Parental authority, the heavily infirmed, and the role of medical professionals in end-of-life care are all topics people will debate in light of this case. For a discussion of parental authority, see this post at Public Discourse.

One conclusion is clear, no matter how you parse the ethics: We ought to pray for life to be protected and seek to do so to the best of our abilities.


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James Arnold

News and Research Manager

James Arnold manages and edits the Alliance Alert, a daily repository of news in all forms—written, spoken, or in video format.

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