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Monday, March 25, 2019

Reprinted with permission from Creators.

 

Charlie Gard’s parents were working on the last major decision they will make for him: how he will die. Chris Gard and Connie Yates had given up their fight to secure an effective therapy for their severely brain-damaged 11-month-old baby. They’ve just agreed to have him spend his last days at a hospice.

Most parents in this situation would suffer unrelenting anguish. But the glare of publicity beating down this case has magnified the trauma. Charlie has been turned into an international cause verging on circus.

The staff at Great Ormond Street Hospital, which held that it could not help Charlie, is now receiving death threats. These are people who struggle day in and day out with the stresses of caring for sick and dying children.

Charlie’s parents condemned the attacks, noting, “We too get abuse and have to endure nasty and hurtful remarks on a daily basis.” The former antagonists now find themselves victims of warped minds.

Charlie has a rare genetic disorder called encephalomyopathic mitochondrial DNA depletion syndrome. He cannot open his eyes or move his arms or legs. He can’t breathe without a ventilator. His heart, liver and kidneys are damaged.

Child deaths used to be common. In early-19th-century London, 57 percent of children in working-class families died by the age of 5. Even royal families were not spared. An elaborate set of mourning rituals had been invented to ease families through their grief.

Medical advances have made child deaths far rarer. That’s a wonderful development, of course, but it leaves parents whose children can’t be saved feeling lonelier. And the seemingly daily parade of medical miracles makes them desperate to believe that somewhere, there’s one for them.

Charlie’s doctors at Great Ormond Street Hospital had decided that nothing could be done for him. The parents, however, wanted Charlie to undergo an experimental treatment called nucleoside therapy in the United States. They asked London’s High Court to approve that treatment.

But the judges held that it would be in Charlie’s best interests to die with dignity. They said that the doctors could withdraw life-support.

Charlie’s parents challenged the decision, but the Court of Appeal upheld it. The same happened at the Supreme Court. The parents then went to the European Court of Human Rights, which refused to get involved.

In early photos, Charlie gives all the appearance of being an adorable healthy boy. The millions who saw those images — and perhaps Charlie’s parents, as well — did not appreciate the extent of Charlie’s illness.

The pope offered to help, and so did President Trump in a tweet. They should have stayed out of this. The president of the Royal College of Paediatrics and Child Health called these very public interventions “unhelpful.”

In a last-ditch effort, Charlie’s parents went back to the High Court to argue for the new therapy. The judge said he would consider any evidence that it would work for Charlie. A few days later, an American specialist traveled to London to see whether Charlie would be a candidate for the therapy. An MRI scan revealed that he would not be.

The hospital now believes that Charlie would obtain better care in a hospice than at his home. For one thing, the ventilation equipment could not fit through the house’s front door. That, too, became a point of contention ending in a courtroom.

A last point of contention was where Charlie would stay until he dies. The parents wanted him home. The hospital thought he’d get better care in a hospice. That, too, ended up in court. The parents came around to the hospital’s view.

The parents, the world, are now on a death watch. As for Charlie, doctors don’t know whether he is feeling pain. To the extent that he is aware of anything, Charlie should know this: He is loved.

Follow Froma Harrop on Twitter @FromaHarrop. She can be reached at fharrop@gmail.com. To find out more about Froma Harrop and read features by other Creators writers and cartoonists, visit the Creators webpage at www.creators.com.

 

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6 responses to “The Sadly Public Last Days Of Charlie Gard”

  1. dbtheonly says:

    This hits the ultimate problem with health care. It eventually fails. We must all die.

    At some point there is nothing more medicine can do. But there are ever more expensive, experimental, or extravagant treatments to be performed.

    In a “for profit” medical system, it is the wealthy who get to try these options. In a “single payer” the Medical System(?) makes those decisions?

    I find it hard to fault the Pope for offering assistance. That’s kinda his job.

    I can fault with politicians intruding themselves for political purposes. Not just here but with Terry Schiavo in 2006(?)

    I have no good answers though.

    • sigrid28 says:

      I cannot offer an answer either, let alone a good one, but I do have a suggestion.

      The parents of Charlie Gard should be left alone by ALL of their critics, many of whom are redirecting innate hostility toward individuals with disabilities (Charlie himself) by foisting accusations upon his parents.

      I offer this suggestion as a member of the community of families whose loved ones are on the autism spectrum or whose child or parent or spouse suffers from lifelong neurological impairment (some of whom have been disabled by injury and/or military service). We are legion. We ask not to be made punching bags by those who have no understanding of our loved ones and harbor no kind feelings toward them.

      This number includes insensitive types in the general public, like Donald Trump: he tweets about sympathy but actually wants to get rid of Medicaid, which is the only program saving many of our families from bankruptcy.

      More surprisingly, medical professionals, who should know better, sometimes also treat parents as punching bags: it is a commonplace that the psychiatrists serving our children either hate or love their parents.

      Within the schools and day-care centers serving our loved ones, the situation is even worse. Administrators who advertise a “therapeutic” environment routinely pay as little as possible to those who actually provide services and often train them poorly, if at all.

      Parents who complain about inadequate conditions are accused of hyper-vigilance. If we do not intercede on behalf of our loved ones, or accept the limitations of what can be done for our parents or children or spouses, we are accused of negligence. These competing accusations are the next generation of discrimination against the disabled and further evidence that our human institutions still have a lot of catching up to do. In the meantime, I intend to accept, support, and embrace Charlie Gard and his parents at this difficult time.

      • dbtheonly says:

        Agreed. but Charlie’s parents have thrust themselves into the vortex of publicity bu suing to continue treatment after the Medical Profession considers it useless. That gives us the right to discuss the issue. It does not give the right to attack, harass, or abuse those parents. They want their child to live. Who can condemn that?

        I’m really, really, uneasy about rno’s idea of helping people die. I’ve see too much “Youth in Asia” in Viet-Nam. Any system that values one life above another is dangerous. “Science” can become its own Moloch.

        I regret any of the problems you’ve encountered with your family’s difficulties. May I offer assistance?

        • sigrid28 says:

          I had to take a time off from responding to your post to have a good long cry. It is extremely rare for anyone to offer to help.

          Please know that it has been a relief to advocate on this comment thread for our families, discussing the issues that affect the outcomes for our loved ones. Who can say how much discourse on NM comment threads and others like them has been influential in stalling the cruel impetus to destroy the ACA.
          This law has helped so many of us substantially in the community of families who have a loved one on the autism spectrum or diagnosed with a lifelong neurological deficit. First, the ACA made mental health parity the law of the land for all health insurers, who now must cover visits to child and adolescent psychiatrists (the only caregivers who can diagnose and prescribe treatments and medications for some of these disabilities). Second, expansion of Medicaid takes up the staggering medical costs incurred by these treatments and medications that would otherwise be unaffordable for many. Our family alone could never come up with $1500 per month (before taxes) needed to cover our medical costs out of pocket–and our needs are basic compared to many families like ours.
          Ours is a success story, which I share only for advocacy purposes. When individuals on the autism spectrum reach adulthood, families in our community enter a phase that has not been well planned out. My son was extremely high functioning and has savant abilities, so much so that the rural high school he attended drove him out because the parents did not want a disabled individual as class valedictorian. This worked well, in the end, because my son finished high school on the Internet and entered college with 18 AP credits. He was the only former of that high school class to receive National Merit Scholarship recognition. He finished college and is not underemployed like many of his classmates, who never call, text, or relate to him, except in a minimal way on Facebook. He maintains our 1992 Cadillac DeVille himself and drives it to and from his part-time job (he cannot handle more than this because of anxiety). In his spare time, he is working on a website that would, hopefully, provide a reference service to which libraries could subscribe. Our goal is that he can eventually support himself by doing what he loves.
          His father has abandoned us in every way except to remain in touch with his son on the Internet (I am grateful for that). A friend supports us by paying part of our living expenses. Since educational institutions no long hire employees based on merit, I work on a long-term writing project which I hope I can sell, eventually, to set up a trust fund for my son. I am so happy to be able to live with him in a small and modest apartment. On his days off, we enjoy visiting the local parks for long walks, shopping, and following our creative interests. I know that in our two-person universe, I set the tone, which I try to keep upbeat. So it was a tremendous, risky gift to me today, to have a good cry, before again taking up this rewarding yet difficult role, which I had to fight for though I never asked for it.
          We must all keep up the fight to maintain the ACA as the law of the land.

  2. rednekokie says:

    Seems to me that this is a prime example of the need to be able to help people die, when there is absolutely no chance of them living at all.
    To prolong life in such a case, even though the child may not even be aware of anything that is going on, can cause only heartbreak for the parents, family, and friends, and accomplish nothing for the child.
    We wouldn’t treat a horse or a dog in this fashion — yet we go out of our way to inflict this upon a wee child who has no say in the matter.

  3. stcroixcarp says:

    When politicians and do gooders get involved in cases like this, things get really ugly. Remember Terri Shivo? Rest in peace little Charlie, may your parents’ hearts heal.

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