Je Suis Charlie Gard
Eleven years ago, my wife and I faced a similar trial to that of Charlie Gard's parents with the news that our beautiful daughter Naomi Rose would not likely reach her day of birth.
The heart-rending case of young Charlie Gard of England puts a most important question before us: Whose life is it anyway?
If a young child is very sick, surely the parents, working in close concert with doctors, have the right to the final say regarding continued palliative or curative treatment for the child, or, God forbid, the question of disconnection from extraordinary measures of intervention.
Charlie was born with an exceedingly rare mitochondrial disease that usually spells early death in infancy, although some patients have survived to their teenage years. What began as a basic disagreement between Charlie’s parents and their doctors at Great Ormond Street Hospital in London mushroomed into an international debate.
Under today’s English jurisprudence – buttressed by an unsuccessful appeal to the Supreme Court of England, and another before the European Court of Human Rights – it turns out Charlie’s parents do not, in fact, have that final say. (Did anyone think the latter Court would have lifted a finger to reduce the speed of the train?)
Chris Gard and Connie Yates were further told they would not be permitted to transfer their son to another medical facility, including to the famed Bambino Gesù hospital in Rome, which offered to help if the UK decisions were overturned, nor to the United States thanks to nearly $2 million raised on GoFundMe.
All these options were denied to Chris and Connie.
Surely they could they take him home, give him a bath, stroke his hair while he died in their arms?
No. Not allowed.
As of this writing, all of Charlie’s life support systems have been disconnected in his sterile bed in Great Ormond Street Hospital. Despicable.
This sets a scary precedent for other parents in the UK, and for those in any country where non-medical government oligarchs get to serve as final arbiters of human life.
What has the Catholic response been? The “certain trumpet sound” St. Paul says should accompany a call to battle (1 Corinthians 14:8)? Not quite. As if to accompany the tepid statement by the Catholic Bishops Conference of England and Wales, the increasingly obtuse Pontifical Academy For Life, under Archbishop Vincenzo Paglia, released this unhelpful statement.
Not all Catholic leaders played it cautious, if not lukewarm, and that is Pope Francis himself, who reached out directly on social media, tweeting, “To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.” (June 30, 2017)
Note the word duty.
Interestingly, l’affaire Charlie has put Pope Francis on exactly the same page as another world leader with whom he’s had his share of disagreements. President Donald Trump tweeted on July 3, “If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.”
As a father, I have no idea what kind of anguish and anger Chris Gard must be feeling right now. Both are justified emotions. As a Catholic, I just wish more middle management in the Church would have followed the Holy Father’s lead – as even President Trump was delighted to do.
In September of 2006, my wife and I faced a similar trial to that of Chris and Connie with the news that our beautiful daughter Naomi Rose had Partial Trisomy 9, and would not likely reach her day of birth. Like her tough-willed Peruvian mother, however, Naomi proved to be an extraordinary fighter.
We had her little self with us for 15 glorious, if tear-drenched, days. Like Charlie, Naomi was not a candidate for any kind of curative treatment. But her doctors and nurses never threatened any of the harassing absurdities to which Charlie’s parents were subjected. Guided by sound and wise moral counsel, and the ever-present grace of God, we somehow did the impossible and selected the hour of her death, which was a morally certain conclusion.
I will never forget the day of her disconnection, the story of which is found here.
I pray it will bring consolation to the Chris and Connie’s of this vale of tears.
As you can tell from her photo, Naomi could be Charlie’s sister. In a real sense, she is.