When government says your baby has to die

Meet Charlie Gard. He’s a 10-month-old baby from London who was born with infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). Thanks to the British state, it’s possible he’ll be dead by the time you finish reading this.

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That isn’t me adopting the scare tactics of those 1990s-era cigarette commercials: Charlie really is scheduled to be taken off life support today against the will of his family who are trying to save him. Though Great Ormond Street Hospital in London has pronounced Charlie beyond hope, his parents, Chris Gard and Connie Yates, were offered experimental treatment in the United States, and they raised £1.3 million for it. But the hospital refused to release Charlie, doctors decided instead to remove his machines, division and circuit courts agreed, and the European Court of Human Rights declined to intervene.

It was an effective death sentence.

Chris and Connie are now in the insane position of not being allowed a shot at saving their son’s life because the hospital believes it would be “inhuman.” Far less brutal to snuff Charlie out of existence entirely. It’s the same sled of logic that’s barreled through euthanasia prohibitions in various European nations, except at least in The Netherlands those seeking an end have a choice. Charlie does not, and neither even do his parents. The moment he entered that hospital, he became the absolute subject of the state-run British medical system, and they have decided that this last glimmer of hope isn’t worth pursuing. A la North Korea, his parents are forbidden from leaving the country with their son.

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Great Ormond Street argues the treatment Charlie’s parents want to try is mere experimental therapy, which they assert with throat-clearing certainty is against the baby’s best interests. “There is significant harm if what the parents want for Charlie comes into effect,” the head of Great Ormond Street’s legal team warned appeal judges. “The significant harm is a condition of existence which is offering the child no benefit.” This “condition of harm” boils down to “possibly being alive rather than dead.” The barrister representing the hospital admitted they had no idea whether Charlie was in any pain, but best not to risk potentially life-saving therapy on the chance that he is.

The parents themselves have acknowledged that the treatment is a Hail Mary, but why would they not try it if the alternative is death? And why in the hell does the frigid hospital staff get to make that decision rather than the mother and father? Experimental procedures can prolong and even save lives, and it would be an unusual mother who didn’t go to the most extreme measures to save her child. Yet that warm instinct, one of humanity’s most imperishable, is being subverted by a clutch of distant experts who assert that they know better. Mindless appeals to authority are now so strong that they hold greater weight in law than the morality of protecting life. It’s an abomination.

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Gard’s isn’t a Terry Schiavo-style case, where differing next-of-kin desires for the ailing are pitted against each other. It also isn’t an abortion case—Charlie is very much out of the womb, and anyway Britain just yesterday approved greater access for women seeking abortions sans any serious controversy. It’s more akin to the case of Justina Pelletier, a Connecticut girl also with a mitochondrial disease who was removed unwillingly from her parents’ custody and locked in a ward at Boston Children’s Hospital for 16 months by all-knowing authorities who insisted her problem was psychiatric. She didn’t improve while there and says she’s “doing a lot better” now that she’s being surgically treated outside of state-ordered captivity.

In both of cases, government laid claim to the roles of caregiver, doctor and jailor. In Charlie’s case, they’ve also donned the garb of executioner. So a baby will die. The experts say it’s for the best.

What do you think?

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