Imagine discovering your infant is one of only sixteen people ever to be diagnosed with a fatal genetic affliction for which the only shred of hope would entail a flight abroad for experimental treatment; but — rather than simply making the albeit complicated and costly trip — the highest court in the land rules your child must die.
This dystopian nightmare might sound like a cinematic creation, yet it’s reality for parents Chris Gard and Connie Yates, whose nine-month-old son, Charlie, suffers from mitochondrial DNA depletion syndrome — a genetic condition affecting cells’ ‘powerhouses’ — inherited when both parents unknowingly carried the faulty gene.
Charlie has been on life support since last October, so his desperate parents sought an experimental therapy procedure in the U.S. to try to save, or at least extend, his life — and raised over £1.3 million (roughly $1.65 million) through online crowdfunding to do so.
Two months ago, the British Supreme Court callously ruled Charlie’s life support at Great Ormond Street Hospital should be withdrawn in order for him to “die with dignity” — so Gard and Yates filed an appeal in hopes of staving off their infant’s imminent demise.
On Thursday, the Court of Appeal shattered their aspirations of saving Charlie’s life — ruling there would be no trip, as prospective treatment could not possibly guarantee improvement.
Connie screamed and wept in anguish, and reportedly ran from the courtroom upon the reading of the decision by a panel of three judges: Lady Hale, the Deputy President of the Supreme Court, Lord Kerr, and Lord Wilson.
“The child’s interests must prevail,” Lady Hale announced, stressing the rights of a child supplant those of the parents, yet coldly denying Charlie’s only prospect for life.
“How can they do this?” Yates sobbed. “They are lying. We are going to America.”
“We have had our parental rights stripped away as if they don’t matter at all,” Yates railed. “The way we have been treated by doctors at Great Ormond Street Hospital has been inhuman. Our son is basically being kept as a prisoner at the hospital.”
Life support for Charlie will be terminated at 5 p.m. today — effectively ending his life and dashing his young parents’ dreams the child might survive if only treatment could be procured across the pond — pending an unusual appeal to the European Court of Human Rights in Strasbourg.
“This is a very sad day for Charlie’s parents and family and our thoughts are with them and Charlie,” a spokesperson for the Great Ormond Street Hospital stated, reports the Guardian.
“We are led by the legal process and when the time comes for a change in treatment, we will support the parents in every way that we can, aiding them through next steps. This would normally take place over at least a number of days. For now, our priority is to ensure Charlie remains well cared for and to offer our support to Charlie’s devoted parents at this distressing time.”
While the parents previously excoriated treatment by the hospital as “inhuman,” stating Charlie has been held “prisoner” to the facility’s whims, Katie Gollop QC (Queen’s Counsel) — who headed Great Ormond Street’s legal team — called the infant’s predicament “sad” but not “exceptional,” adding Gard and Yates have acted arrogantly as if “parents always know best.”
“The [alternative therapy in America] would take time and over the weeks and months Charlie would be forced to remain in his parlous condition: he can’t see, can’t hear, can’t cry, can’t swallow. He has a mechanism that causes his lungs to go up and down. We don’t know whether he suffers pain,” Gollop previously told the Supreme Court.
“There are children whose conditions we cannot cure and whose conditions we cannot ameliorate. It happens very often and the parents of that child don’t want to look back later and think there might have been something they could have done for this child which they left undone.”
Gollop noted the parents have behaved unambiguously as wards over Charlie’s fate — stealing his unutterable voice — as if their wishes supercede the rights of the infant to pass away without interference.
“The parents are deemed to be … the sole and only determiner of what can happen,” Gollop asserted, somehow unironically adding, “[that’s] dangerous and it’s power without end.”
Precisely how denying the only feasible chance at life for Charlie — and greenlighting what amounts to a tacit, cruel death sentence — could not be considered State power without end, counsel did not make immediately clear.
“The issue is whether the state has the power to intrude on decisions the parents have made in order to mandate that child’s death before it might come to an end,” barrister for the parents, Richard Gordon QC, had contended in opening statements.
“We say there’s a boundary beyond which the state cannot simply go without the strongest justification. These are model parents trying to do all they possibly can for the benefit of their child. Their view on what is best for Charlie differs from the court.”
Indeed, the case of little Charlie Gard might be the penultimate example of the Nanny State gone grievously awry — provoking delicate esoteric questions on the balance between governmental protections and the right to self-determination, with the additional complications of parental rights and consent.
In fact — given that pilot treatment could be had with the necessary funds and a trip overseas — to align with the court in this case, would be to affirm the State has ultimate power over life when it becomes a troublesome burden.
Neither Gard nor Yates have touted nucleoside bypass therapy as an absolute miracle for the brain and muscle damage associated with mitochondrial DNA depletion syndrome — Charlie will never be capable of cavorting through childhood with peers — rather, adding a simple powder to his food could improve and prolong his life.
But the British high court instead aligned with Great Ormond Street Hospital — as well as a hospital in Spain, through which a second opinion had been sought — in dictating the slim chance for improvement not sufficient to warrant what would be a difficult journey to the U.S.
Indeed, no one has claimed the trip, itself, would be inherently harmful to Charlie’s condition — meaning the court is literally denying the child’s only shot at life because treatment in America cannot unassailably ensure improvement.
“At the heart of the legal case is the right of relatives to have a say in how doctors treat a loved one,” Charlie da Silva, a second barrister for the family, asserted prior to the hearing.
“This case is different from others because the parents have found a reputable alternative hospital that is prepared to provide treatment. If a hospital is not prepared to carry out a particular treatment then it should not be able to prevent another hospital which is ready, willing and able to provide the treatment from doing so.”
Citing the draconian British law which led to this existential gordian knot, da Silva and the family’s entire legal team took the case on a pro bono basis.
“Unless their decision will cause or is likely to cause significant harm to their child, parents should be the final decision makers,” da Silva continued. “However, as the law currently stands as soon as a child is admitted to a hospital the parents immediately lose their parental responsibility.
“The doctors become the final decision makers on what is in the best interests of the child. The doctors decide what treatment the child should or should not have and in the final analysis whether the child lives or dies.”
Charlie’s case cleaved a rift in the U.K., highlighting extreme control by the State over the rights of parents who — for whatever reason — might not feel their child can attain paramount treatment through normal channels.
“There’s a hospital ready and waiting,” lamented supporter of the family, Michelle Standen, outside the court in Westminster. “It’s disgusting. Why not allow him to go? The funds are there. He’s not in pain. All the time they have been doing the court cases, they could have been treating him.”
Sarah Fisher, another supporter and familiar with friends of the family, added, “I have not seen any evidence that the doctors are right. The doctors seem to have made an early clinical decision and don’t want to back down.
“He’s left in limbo for five or six months. It’s not fair. We should listen to the parents in this country rather than looking down our nose at them. They are the ones who spend all their time with the child.”
With mere hours remaining before life support is withdrawn, Charlie — a child so new to the world he will likely never know the historic significance of his existence — will soon be forced to endure death, even as the tantalizing prospect for extended life lies just out of reach overseas.
Outrage over the untenable life and death of Charlie Gard demands we all examine how readily we fork over innate rights to the government — particularly in the name of protection, security, and fear.
Bewildered, da Silva mourned the court’s disputatious decision, stating, “That cannot possibly be right. It strikes at the core and offends the very essence of parenthood.”
“He deserves this chance,” Gard pled tearfully to the court as the hearing began.
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Clutching Charlie’s toy monkey, the desperate father appealed to the sentiments of the court, attesting, as any loving parent would,
“My son is the apple of my eye and I would do anything for him.”