The heartbreaking case of Charlie Gard is not a parable -- just one family's tragedy.
It's been so many years since our daughter was born and immediately died. But even with the cool-headed benefit of hindsight, I'm sure we made the "right" decision for us. (And thank goodness it wasn't judged in real-time by partisan onlookers around the globe!)
But even having suffered through the tragedy of a lost baby, my husband and I aren't in a position to answer the question of when it's appropriate to treat gravely ill infants and when nature should be allowed to take its course. This is because there is no singular answer to that question. Circumstances change as time goes by, and technology enables previously unimaginable medical and surgical "miracles."
No one -- not parents who've been through similar traumas, not policymakers who have a pet crusade for or against limits to heroic measures for saving lives, and certainly not politicians looking to exploit a family's unspeakable tragedy -- should be weighing in on what Connie Yates and Chris Gard "should have" done.
The conservative British columnist Melanie Phillips described the drama surrounding the Gard case as "a cruel and ignorant campaign." On her blog, Phillips wrote: "The parents in their great distress cannot be blamed [if their baby experienced pain or trauma from having his life extended through desperate measures]. The people who should consider what harm they may have done here are all those who, through giving the parents such false hopes, so cruelly embedded them in their denial of reality."
She's not wrong.
But it is worth noting that though this false hope fueled political grandstanding and ideological bullying -- and, perversely, generated ad revenue for media companies -- it was also probably the only thing helping Charlie Gard's parents endure such a heart-rending time.
If there's any takeaway here, it's that Charlie Gard's life and death are not a case study or parable about the bureaucracy of national medical systems. And his experience doesn't belong to the world, not even to those who mourned for him.
No one but his parents have a right to take any kind of life lesson from it. After all, they're the only ones who have to live with the consequences of a heartbreaking situation that offered no easy solutions.
Esther Cepeda's email address is firstname.lastname@example.org.
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