The judicial decision to allow mechanical life support to be removed from the British infant, Charlie Gard, has been roundly condemned by some sources. The infant’s distraught mother lamented that the parents had been allowed “no control” over their child’s life and death. Demonstrators, calling themselves “Charlie’s army,” assembled near the courthouse crying “shame” at the court’s failure to sustain a preservable human life. Conservative commentators condemned the “unwarranted” governmental interference with parents’ child-rearing prerogatives. They wondered why the parents weren’t permitted to transport the infant, at their own expense, from London to New York to try an experimental medication being offered by a Columbia physician. Another conservative source accused the National Health Service of taking Charlie prisoner, contending that the British health service feared being shown up by American free enterprise medicine if Charlie were treated in New York.
The Setting
Charlie Gard was born on August 4, 2016, suffering from a rare genetic disease called mitochondrial DNA depletion syndrome (MDDS). MDDS seriously affected Charlie’s brain and muscles, leaving him without ability to hear, see, cry, move his arms or legs, or breathe without a mechanical ventilator. On October 11, 2016, Charlie was admitted to Great Ormond Street Hospital (GOSH) where he was continuously treated until just before his death in a hospice in July 2017.
In early January 2017, the GOSH clinicians had been willing to import and administer an experimental drug (nucleoside powder) touted by a N.Y. physician, Dr. Michio Hirano. Nucleoside treatment had been used by Dr. Hirano for a different mitochondrial mutation (TK2), not MDDS. However, before nucleoside treatment could be initiated, Charlie experienced brain seizures causing even more brain damage – leaving no signs of upper brain activity necessary for responsiveness and interaction with an environment. GOSH’s staff then concluded that there was no meaningful chance that nucleoside treatment could help Charlie. In February 2017, GOSH applied for a judicial order declaring that withdrawal of the ventilator would be in Charlie’s best interests (to shorten the pain and suffering that Charlie was probably experiencing) and therefore would be lawful.
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