• Daniel Ethan Finneran

God Save the Prince-God Damn the Pauper

April 2018

The bells at Buckingham Palace have rung. The trumpets at cousin Kensington Palace have sounded their mirth. The tranquil Thames is soaked azure blue while busy Lombard Street is awash in excitement and cheer. Besotted the Britons are, as are the paparazzi, as is the world who together join that small island of the north Atlantic in what’s come to be a biennial choral ode to the crown. The reason for the festivities and the attention is, of course, the latest bundle of joy born of the royal line. The Duke and Duchess of Cambridge—the strapping, debonair, balding, yet still manifestly virile William and his beloved Kate—have this weekend welcomed into the world their third child. Still yet to be named, the little infant nobleman joins brother George and sister Charlotte in what will most assuredly be a blessed life.

Should he be so ambitious as to want for himself a kingdom at this inchoate age, he’d better be ready to wait. Precocious though he might prove himself to be, he’ll be embarking upon a long and circuitous journey to the top. The road to that nominal throne, that titular and vestigial piece of history, wouldn’t come to him directly nor would it do so with haste. Nevertheless, whether or not he ultimately climbs to sit atop the dais, to hold the scepter, and to don the regalia in purple and white, most will assume that his future prospects are secure.

Be you prince, pauper, aristocrat, or simple prole, upon entering this world, the potential by which you might shape yourself and the future in which you’re bound to live is all you have. They’re the only things that accompany us in our passages from the many wombs from which we come and the circumstances we soon after find. This is the universal human truth. There is nothing more fundamental. Potential is all we have—blind and uncertain it is, but it’s all we’ve got. The rest is wholly accidental.

The accidents of birth can augur well, as they do in the case of the young prince. It’s of no doing of his own, as he’s the mere beneficiary of good fortune and chance. So too, though, can these accidents of birth bode ill. They can be cruel and unpropitious, as they are in the case of Alfie Evans.

While the former savors his first gulps of air in the spring of both his life and of the year, the latter breathes his last. At Alder Hey hospital in Liverpool, an industrious city about five hours northwest of London, Alfie—a child of twenty-three months—has been taken off of his ventilation system and left to await his imminent death. Life-support is supportive no more. Now forced to respire on his own, young Alfie’s life has been cut acutely, breathlessly short. After having been received at the Alder Hey Children’s Hospital in a semi-vegetative state, he was treated aggressively for his mysterious disease, which persisted in its evasion of a formal diagnosis. Incapable of pacing and maintaining the rise and fall of his own chest, the prognosis for the young boy was bleak from the outset. At his best, he was lethargic, unresponsive, weak, and frail. His developmental milestones went unmet and those around him grew concerned. He was taken to the hospital, where the doctors and diagnosticians sat perplexed. His symptoms, taken in their entirety, were anomalous and inconsistent with most other pediatric diseases.

Sadly, it was at long last discovered that Alfie Evans was born with Mitochondrial DNA Depletion Syndrome, or MDS. The disease, incredibly rare, is horribly destructive to its host. Occurring in less than 2% of newborns, MDS is an autosomal recessive disease, one that proves debilitating to the child and ineluctably fatal. The child thus diagnosed can expect to live only a short while and to endure an accretion of painful symptoms, all of which prove to exacerbate with time.

Among the symptoms by which the child is to be burdened throughout the brief course of his life are listlessness, breathlessness, seizures, hampered mobility, cognitive decline, malaise, and fatigue. These incapacities will mount to become an insuperable barrier between the child and his life. They’ll become an indefatigable siege, attacking the child’s muscular, respiratory, and neurological systems until in death, he can sue for eternal and silent peace. His mitochondrial DNA, a matrilineal gift to the body and to the cell, will fail to operate as it should. The muscles will become flaccid and limp, the brain, an incoherent mass of grey. The diaphragm will fail to move the chest cavity in its rhythmic tune and the lungs will slowly collapse. Starved of oxygen, the body will slip acceptingly into death. Without the vigorous and continuous efforts of the mitochondria, that vital metabolic life-force and battery-pack of the cell, no organism can long survive. Those diagnosed with MDS, for this reason, typically will succumb to the ailment in the first few years of life. The luckier few might withstand the throes of childhood to meet their death in adolescence. Very seldom is it that one suffering from MDS will see himself alive as an adult.

It’s a moribund disease, to be sure, and one currently without a proper remedy. Rather palliative than curative, treatments and therapies for combatting MDS can hope only to extend the life of the patient briefly and to make its expiry as comfortable as possible. As there is no cure, the child’s life can only be prolonged artificially. In this way, the child is likely to live out his days in a pharmacological stupor, a mixture and haze of anguish and somnolence in the intensive care unit of a hospital wing. Parents will be able to look on at their suffering newborn now desperately, now hopelessly until the line runs flat. Doctors, more experienced and stoic than mom and dad, will do so first hopelessly and then sympathetically. They know the pathology just enough to realize the futility of their efforts and the death that’s guaranteed. In this sad state of affairs, all will persist, until inevitably the child dies.

But regardless of the gravity of the case and the unlikelihood that from his condition, the child will emerge with life anew, it must be up to the parents to decide how the course of their child’s treatment should proceed. This is the initial and final prerogative of any parent living in any civilization throughout any epoch of time; it’s a natural right, a biological and unalienable authority every parent unconditionally holds. It’s not something with which he or she can dispense, nor is something that can be arrogated by a professional or clerical team, whether they don white coats or black frocks. The parent ought to and necessarily must determine the fate of his or her own child when the situation requires a decision be made. It simply can’t be the decision of another, no matter how medically enlightened or divinely certain.

Yet the British Supreme Court has enjoined Alfie Evans’s father from doing just that. It won’t allow him to remove his ailing son from the Alder Hey ward and seek treatment elsewhere, irrespective of the likelihood of the improvement of his condition if treated in a different place.

The father, himself a young man in his second decade of life, is under no circumstances permitted to walk into the hospital, cradle in his arms his atrophied child, and leave whence he came. He’s not allowed to walk out the door with his boy—his flesh and his blood—so that he might seek by any desperate and possible means an avenue that might extend his child’s life. Should he be so brazen as to make that last-ditch attempt on behalf of his son, he himself could be taken into custody and tried not only for endangering the child, but for subverting the court and blaspheming the crown.

This is both frustrating and painfully sad. The very thought of a father being carried away in hand-cuffs for having the temerity to attempt the rescue of his son is gross in the extreme. What’s worse, though, if anything really could be, is that there is potentially an avenue by which Alfie might be helped, if not saved, if only he could be removed.

Soliciting for help on the continent, in America, and everywhere in between, Alfie’s father was able to catch the ear of Pope Francis. Sympathetic to his and his son’s plight, the Pope was able to secure for Alfie Italian citizenship, if only the lad were sufficiently stable to travel that far. Working with the Italian government, the Pope was further able to plan for an expeditious flight to transport Alfie from Liverpool to the heart of the Catholic see. Once there, in a Vatican hospital, the child would be able to receive life-preserving palliative care in the salutary and, on some occasions, miraculous air of that ancient town. The medical team might even then be more aggressively able to pursue experimental treatments that the British doctors hadn’t the time, the inclination, or the expertise to pursue back home.

Yet this propitious offer from the Pope seems as though it’ll be for naught; the opportunity for Alfie to fly to Italy has been effectively quashed. Reminiscent of the heart-wrenching story of Charlie Gard but a year ago (who died tragically of the same disease), the court has ruled that it wouldn’t be in the “best interest” of Alfie if he were to be removed from the hospital or to continue breathing artificially. The British doctors, buttressed and legitimated by the British courts, have attested repeatedly and unequivocally that transporting the boy or furthering his treatment would be both “futile” and “unkind”. In a word, it would be malfeasant and thus contrary to that immemorial Hippocratic creed. It’s for this reason that the British courts have refused to allow Alfie’s passage to Italy and why the doctors have put an end to their provision of palliative care.

To say that the British court has signed in ink young Alfie’s death warrant would be cruel and it wouldn’t be right; as is it in all of ours, Alfie’s fate was etched in his genes. But it is incredible to think of a world in which a father isn’t able, because of the injunction of a court, to exhaust every avenue in an effort to save his boy’s life. A court, mind you, that’s impersonal and remote and disinclined to the passionate and human appeals of a father and of a man. It also serves as an acute reminder of the potentially insidious nature of the powers vested to deeply in the state. It might be that these powers have pushed their imperative too far when it begins deciding to whom life is given and from whom it’s withheld.

In time, certainly decades from now, it’s possible that things will be different. In the latter half of the century of our current age, maybe an unnamed prince will shake the British parliament and improve upon this broken status quo. For Alfie’s sake, one hopes that this prince might live out a life—vivacious, salubrious, healthy, and strong—and effect this desperately needed change. Alfie Evans, Charlie Gard, and countless other British children yet born are relying on it.

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