Charlie Gard: 'An awfully big adventure'

Originally Appeared in : 9716-8/3/17

The Great Ormond Street Hospital (GOSH) for Children in London was the beneficiary of a generous gift from Sir J. M. Barrie in 1929: the rights to his masterpiece, Peter Pan. The adventures of the “boy who never grew up” have bankrolled GOSH’s rise to the status of one of the world’s most renowned children’s hospitals. Ironically, GOSH played a key role in blocking the parents of Charlie Gard from seeking treatment elsewhere so that their little boy might have one last chance to grow up.


News outlets report that Charlie Gard was born on August 4, 2016, “with a rare genetic condition known as Mitochondrial DNA Depletion Syndrome (MDDS) that causes progressive brain damage and muscle failure, including the muscles needed to breathe.” Charlie’s condition was not diagnosed until two months later. “By early October his parents brought him to their local general practitioner because they were concerned that he was not gaining weight. On 11 October, he was taken to Great Ormond Street Hospital and put on a mechanical ventilator because he was having trouble breathing.” By the end of October, the doctors suspected that Gard had MDDS, a diagnosis that was confirmed by a genetic test in mid-November.


“By mid-December, the child began having persistent seizures as his brain function deteriorated, he had become deaf, and he lacked the ability to breathe or move or open his eyes independently. His heart and kidneys were also starting to fail, and it was unclear as to whether or not he was capable of experiencing pain.” 


By January 2017, Charlie’s parents, Chris Gard and Chris Gard and Connie Yates, and his medical team at Great Ormond “decided to attempt an experimental treatment in which nucleosides would be given to the child in a drink. However, as the medical team was in the process of applying for approval of the ethics committee to do so, Gard had another round of severe seizures that caused further damage to his brain. The GOSH doctors determined that the further damage made the experimental treatment futile, and in light of the risk that the child was experiencing pain, they withdrew their support for attempting it. They began discussions with the parents about ending life support and providing palliative care during the short time it would take the child to die. The parents did not agree.” Instead, they wanted to take the child to the United States for experimental treatment, eventually raising over a million British pounds by crowd-sourcing to pay for this treatment, as Britain’s National Health Service (NHS) would not do so.


Because the hospital and Charlie’s parents could not reach agreement, the hospital’s ethics committee petitioned a court to permit it to remove Charlie from the ventilator as it deemed further treatment futile, overriding his parents’ wishes; the parents had legal representation at the hearing. 


In the United States, an individual may indicate his or her wishes for treatment or the ending thereof, either orally if conscious and articulate or in written advance directives; in the case of an infant, his or her parents have the legal right to decide. In the absence of such directives, “spouses, adult children, parents, adult siblings and will be asked in that order what should be done. In some states, the physician can assume decision-making authority, absent any of the above” (emphasis added), as Father Nicanor Austriaco stated to the Atlanta Province assembly of priests in 2014. It is otherwise in the United Kingdom, where medical authorities (physicians, hospitals, etc.) can assume decision making power even when any or all “of the above” are present.


Charlie’s story went viral on the Internet and was covered in the international press. Pope Francis offered his prayers and support to bring Charlie to the Vatican-owned Bambino Gesù pediatric hospital in Rome and U.S. President Donald J. Trump tweeted his support to bring Charlie to the United States, as his parents wished. Ultimately, the High Court allowed the American doctor, Michio Hirano, “to evaluate Charlie and to confer with GOSH staff.” After reviewing all the scans, Dr. Hirano “was no longer willing to offer the experimental therapy because he saw no chance of it working due to irreversible muscle damage caused by the disease.” Charlie’s parents withdrew their initial request to fly him to the United States, but made one final request—to be allowed to take their son home to die. On July 27, Great Ormond Street Hospital “went back to court to obtain a ruling on how to proceed; the High Court ruled with GOSH, and said that the child should be moved to a specialist children’s hospice, with mechanical ventilation being withdrawn soon after. The child was transferred to a hospice on that day, and on 28 July mechanical ventilation was withdrawn, and his parents announced that he had died.”
Austen Ivereigh, contributing editor of Crux, has posted a reflection entitled, “Is British or American view of Charlie Gard tragedy more Catholic?” His conclusion is a draw. “The first [American] appears to value autonomy more—that of the parents to determine their children’s treatment, as well as that of the hospital to carry out heroic treatments. But the British system seems more likely to prevent either euthanasia (which remains illegal) or burdensome treatments that are not in the patients’ interests.” American Catholics should take note and ponder both sides of this case, as we continue to “discuss” our own health-care system and its underlying principles. 


In the end, as Ivereigh points out, Charlie Gard made “a greater impression on the world in his 11 months’ existence than many people will make in their lifetimes. He elicited great love: Not just from his extraordinary parents whose testimony has moved the world, but from the hospital and the courts too, as well as public opinion. His case divided us because we cared enough to want to save him, or to want him to avoid unnecessary suffering. Either way, it was love that led us to argue so heatedly over the fate of a baby we never knew.”


Barrie’s Peter Pan said, “To die will be an awfully big adventure.” Charlie’s death was certainly an awfully big adventure. May the angels lead him into paradise, or as Peter Pan would have said, “Second star to the right and straight on ’til morning.” 


Father Douglas K. Clark STL is pastor of Saint Matthew Church, Statesboro.

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