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Politics

The heartbreaking case of Charlie Gard is not a parable -- just one family's tragedy.

Esther J. Cepeda on

CHICAGO -- Before 11-month-old Charlie Gard died in Britain last week from complications of a rare disease, his short life triggered debate about when it's appropriate to stop treating patients and allow them to die.

His parents, Connie Yates and Chris Gard, mounted an epic struggle, trying every conceivable effort to save their son. In the end, however, their baby slipped away before they were ready to say goodbye -- they never got to bring their son home for their last hours as a family.

Predictably, there has been outrage and backlash about this family's sad tale.

People read short headlines and feel compelled to pass instant judgment about what Yates and Gard "should have" done. Some think the parents should have accepted the reality of their son's disease, called mitochondrial DNA depletion syndrome, and let him pass "humanely" and quickly. Others believe they should have gone public earlier when there was a better shot at experimental treatments.

There is no right answer.

Seventeen years ago, my daughter was diagnosed, in utero, with a rare disease that would virtually guarantee her death soon after birth. Best case scenarios involved severely debilitating medical conditions and disabilities that would have made a normal childhood impossible.

But when the doctors gave my husband and me the bad news -- and offered us the opportunity to terminate the pregnancy right then -- the specter of a profoundly sick and disabled child that would live for any amount of time was, to us at that point, a gamble worth taking.

It was a less than logical choice. She was my second, high-risk pregnancy. I had a toddler at home and was putting my health in peril by not terminating. The hospital costs were soaring and there was no guarantee our baby would even live long enough for any surgical or medical interventions to try to prolong life.

Really, looking back on it, the easier, less complicated and medically cheaper thing to do would have been to end the pregnancy. I would have saved myself and our family a fair amount of physical, mental and emotional suffering.

But there was no convincing my husband and me that we shouldn't do everything humanly possible to ensure a live birth and pray for the miracle of even a very sick baby.

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.

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Esther Cepeda's email address is estherjcepeda@washpost.com.

(c) 2017, Washington Post Writers Group


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