Charlie Gard turned eleven months old on Independence Day. He may not make it to twelve months. Charlie has a terminal diagnosis. Medical experts believe infantile-onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) will end his life. This rare condition remains incurable. Charlie has suffered seizures and brain damage. He can’t move his limbs on his own, and his muscles grow progressively weaker. He needs a tube to feed him and a machine to breathe for him.
Some months ago, doctors recommended removing the ventilator. “Let him go; he needn’t keep living like this.” Dad Chris and Mom Connie requested their baby’s release from his London hospital. American physicians were ready to attempt experimental therapy unavailable in the U.K. Eighteen people in the U.S. have been treated with an oral medication of natural compounds to remedy MDDS. An internet appeal even raised 1.3 million pounds to pay for it. The Great Ormond Street Hospital (GOSH) refused. Multiple British and European courts endorsed that decision to deny. They concluded that seeking the treatment wouldn’t “serve Charlie’s best interests” but only “expose him to prolonged suffering.” Magistrates have ordered life support removed—against the parents’ will (and against Charlie’s will also).
“We just CAN’T let our baby die when there is something that might help him!” Connie pleads. “We won’t give up on him because he has a rare disease. He deserves a chance and he deserves a life.” “If he’s still fighting, we’re still fighting,” Dad adds. The Vatican Bambino Gesu pediatric hospital in Rome has offered to assume Charlie’s care. But GOSH persists in retaining custody (even though nobody has assigned them that authority). Chris and Connie aren’t even allowed to take Charlie home to die. “We want to give him a bath at home, sit on the sofa with him, sleep in the bed with him,” Charlie’s parents explain. “But now we’re being denied that.”
Such situations involve weighing subjective judgments. Does any slim chance at improvement justify certain side effects? What course of action—or inaction—achieves Charlie’s overall welfare? Experimental treatments represent only educated guesses and best estimates. But so do terminal diagnoses. Both science and Scripture testify that biological parents are best positioned to protect and provide for their children, unless the parents prove patently incapable. The Almighty Maker has entrusted fathers and mothers with these deliberations and decisions. He has equipped them not only with minds but also with hearts for the duty.
Chris and Connie are obviously not incompetent. They are not careless. They are not acting out of malice or being abusive. Businesses like hospitals operate with profit, public perception, apportioning resources, and satisfaction of the greatest percentage of customers as highest priorities. Governments best serve the populace when they safeguard the sacred family relationships rather than subvert them. This month’s holiday observance reminds us of the importance of maintaining these strict limits. Forcing doctors and hospitals to participate in procedures they oppose undercuts the usefulness of their expertise. But neither ought the institutions compel the parents. They love Charlie more than medical practitioners do. They love their son better than legal professionals. And parental compassion imparts comforts in difficulty that chemicals, devices, and verdicts can neither replace nor approximate.
Abortion activists want unwilling doctors to refer. Assisted-suicide enthusiasts likewise would make physicians who decline taking part in such a procedure to connect patients with providers who do practice it. Two states obligate pregnancy resource centers to inform their clients about the availability of government-funded terminations. Why aren’t these same voices calling for Charlie Gard’s transfer, or at least his discharge? What about Charlie’s autonomy? What about his parents’ rights and choices? Where has the opposition to bureaucratic interference in health care gone? Critics often accuse the for-life community of interest only in babies before birth and ignoring them after. Yet we fight for Charlie and stand alongside Chris and Connie while almost all others fall silent and sit still.
We ask the real question because we are not afraid of the right answer. Is a life beset with suffering really still worth living? In the fallenness of humankind, no life can escape affliction. Creation’s brokenness makes surviving without suffering impossible. Everybody hurts. Yet under God’s grace, pain never occurs without purpose. Christ Jesus crucified and resurrected portrays, proclaims, and performs greater goods for humankind than painlessness or even pleasure. No one hurts hopelessly. God’s Son incarnate among us redeems the most awful experiences and gives us community, sanctity, and dignity in the midst of them.
Every life, every human being in every state and at every stage, enjoys this infinite preciousness because our Father and Savior has made and died for and joined to each one eternally. And Lutherans For Life will keep speaking truth to change hearts and keep showing love to save lives.