In recent times, the fight for 10-month old Charlie Gard’s chance at life has become a cause célèbre. For those in the dark, here is a quick summary of what has happened thus far.
- August 4, 2016 – Charlie Gard was born
- When he was a few weeks old, he had trouble lifting his head, wasn’t growing well and needed a feeding tube
- Breathing became shallow over time
- October 11, 2016 – admitted to the Great Ormond Street Hospital in London
- Diagnosed with Encephalomyopathic Mithochondrial DNA depletion syndrome
- Condition caused muscle and organ dysfunction & cerebral disorders
- Charlie is 1 of 16 people to have ever had the condition
- Resulted in extensive brain damage and Charlie having to be on life support
- He can neither breathe, see, hear nor swallow on his own
Charlie’s chance at life
Upon exhausting unsuccessful treatment options, and unable to find treatment in the United Kingdom (UK), Charlie’s distraught mother, Connie, desperately searched the Internet for a possible option to fight for her son’s chance at life. She discovered an American doctor who was willing to perform an experimental treatment on Charlie.
However, the Great Ormond Street Hospital in London, where Charlie was admitted, refused to release the baby. Charlie’s parents made a plea in the European Court of Human Rights, to allow them to fight for Charlie’s chance at life. Connie took to social media to set up a crowdfunding page. More than 83,000 people donated and they reached the targeted amount of 1.2 million a day before the High Court’s hearing of the case.
Unfortunately, the weight of the scale did not tip in their favour. The court ruled that the hospital could turn off Charlie’s life support. The parents were neither allowed to go to the States for treatment nor bring Charlie home.
The court’s decision is that it is lawful for the hospital to turn off life support and not prolong Charlie’s acute agony. There is no realistic or palpable prospect of improvement for Charlie by undergoing the experimental treatment. There is hardly a chance at life for Charlie and making him suffer would be to no avail.
This left the parents devastated. They felt that their parental rights were taken away and strangers were deciding when, how and where their child would die. There has also been a massive public outcry over this matter.
More than 160,000 people signed a petition calling for Charlie to be “released” from the hospital and hastags like #dontkillCharlie and #charliesfight have been going viral on social media. People view the court’s decision as a violation of human rights and depriving Charlie of something as basic as his right to have a chance at life.
Pope Francis has extended his affection and sadness to the helpless parents and prays that their wish to seek treatment for their child is granted. US President Donald Trump has also expressed solidarity with Charlie’s parents, and offered his help and support.
In spite of how vehemently Charlie’s parents feel or protest against this matter, the Court stands firm in its decision.
The Court argues that treatment is futile and the decision is in the best interest of Charlie. The highest court has rejected the plea, and right now, the parents only have a little more time with Charlie before the hospital turns the life support machine off.
This is indeed a heart-wrenching story. It is a profoundly onerous bioethical matter. In the past, things were simpler when humans didn’t get to play the hand of God. In a situation like this, nature would simply take its course and decide whether or not Charlie had a chance at life.
There would be no decision to make and no courts to go to for the decision would be made neither by the judiciary nor the hospital. God would decide when to turn off the life support that he had placed the child on.
Perhaps the advancement of science and technology has placed us in a sticky situation. Perhaps the irony of the freedom and ability to make decisions against nature is that it has entrapped us in the argument of right versus wrong. Is there a clear dichotomy between right or wrong in this case?
We’ve heard the opinions of people around the world. What do Singaporeans have to say?
Gideon Ren, a seminary graduate student and Strengths Finder coach, shares:
“From a theist point of view, we try as much to save to the best of our abilities, but to prematurely sign a death sentence on a baby that seems to be (in our finite understanding) hopeless, would be to undermine the sanctity of life, and the perseverance of the human will.”
He adds that apart from humanitarian grounds, this issue also extends to what meaning it holds for the medical profession:
“By simply writing everything off as a no-go, you inherently disarm research impetus and medical discovery. It would become a slippery slope for the medical profession.”
This echoes the sentiments of retired Medical Consultant Abdul Majid:
“This decision would make the hearts of Charlie’s parents bleed and I think they should be given a right to try every option that they had to give their child a chance at life. Whether or not the outcome is successful, it would mean closure for them. They wouldn’t plague themselves with the what ifs, for the rest of their lives.”
But apart from the parents’ emotions, he adds:
“From a medical perspective, it is experimental treatment like these that eventually pave the way to finding cure for diseases. Take meningitis for example. In 1891, Heinrich Quincke, used the newly discovered lumbar puncture to study cerebrospinal fluid. If no one had stepped forward or allowed experimental treatment, would we now have the cure and vaccines that we have?
In this case, if bringing their child for experimental treatment leads to some groundbreaking medical discovery, and the child eventually passes on, the parents would find comfort in knowing that their efforts were not entirely in vain.
We also sought the opinions of Joseph Lim, an agnostic, and Jasmine, an atheist. We wanted to know if people who didn’t subscribe to religion would have a different take.
Joseph Lim’s take:
“If it’s successful, we advance our medical knowledge. If it’s a failure, we still advance our medical knowledge. Also, if I were the father, I would be furious if I was denied a chance, however slim or impossible it was, to save my kid.”
That’s a child’s chance at life we are talking about.
But on the other hand, he acknowledges why the court refuses to accept the plea:
I can see why they are not allowing it. It’s pretty much human sentiments. The baby is still human and no one wants to extend his suffering.
But my take is that letting him go for the treatment itself is being human. If it were my call, both on humanitarian and medical grounds, I would let him go for the treatment.”
For me, it’s simple. The child has suffered enough. And if his condition can’t be cured or his lifespan can’t be prolonged, I think the court’s decision was best. It’s going to stay in the parents’ hearts for awhile but if you think about it, it’s for the better.
Rather than fighting for something that won’t do much good, just put a stop to it. Maybe there is no chance at life to fight for. Yes, no doubt that it’s a life we are talking about, one must not torture another’s life because they are unable to come to terms with the reality of the situation.”
This mirrors the views of Robert D. Troug, a pediatric intensive care doctor at Boston Children’s Hospital and the director of the center of Bioethics at Harvard Medical School.
He mentioned that the child is dying and nothing can stop that. It is the worst thing for a parent but they need to come to terms with it and not fight it.
Well, given the nature of the situation, it’s hardly surprising that people have such polarising opinions about the court and the parents’ decisions. The controversy has unfolded at an international level.
At the end of the day, what it all boils down to is that Charlie is the center of his parents’ universe. They love him with all they have and even if the chance is one in a million, they want to take that chance. It is their child’s chance at life, and it matters.
However damaged or disabled their child is, they believe that he is worthy of a chance to be loved and accepted. They believe that he deserves a chance at life.
At the very least, all they want as his parents is to bring him home, and let him sleep in his own cot, even if it’s just for one night.
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The New York Times