Another child doomed by faith, and an “ad” for vaccination

This time the child, a girl, was reared in an Amish home, which means she has virtually no chance of escaping that bizarre religious milieu.  It also means she will die. According to Yahoo News, a 10-year-old Amish girl with leukemia has apparently disappeared, probably spirited away by her parents so she wouldn’t receive chemotherapy:

A 10-year-old Amish girl with leukemia and her parents haven’t contacted a guardian appointed two months ago to make medical decisions for the girl after her parents stopped her chemotherapy treatments, the guardian’s attorney said Wednesday.

It’s unclear whether the girl has resumed treatments, and there are indications that the family has left its farm in rural northeast Ohio.

The girl, Sarah Hershberger, has not restarted treatments at Akron Children’s Hospital, said Clair Dickinson, the guardian’s attorney. He said it’s not known whether she is undergoing chemotherapy anywhere else.

Doctors at the Akron hospital believe Sarah’s leukemia is treatable but say she will die without chemotherapy. The hospital went to court after the family decided to stop chemotherapy and treat Sarah with natural medicines, such as herbs and vitamins.

An appeals court ruling in October gave an attorney who’s also a registered nurse limited guardianship over Sarah and the power to make medical decisions for her. The court said the beliefs and convictions of her parents can’t outweigh the rights of the state to protect the child.

The family has appealed the decision to both the appeals court and the Ohio Supreme Court.

Messages seeking comment were left Wednesday with attorneys representing the family.

One of the attorneys, John Oberholtzer, told The Medina Gazette he has been in contact with the family but does not know its whereabouts or whether the girl is being treated.

Dickinson, the guardian’s attorney, said that shortly after the appeals court ruling, a taxi was sent to the family’s home near the village of Spencer in Medina County, about 35 miles southwest of Cleveland. The taxi was to take the Sarah to the hospital in Akron, but someone at the home said the family was not there, Dickinson said.

Sarah’s condition is treatable—indeed, possibly curable—but she asked her parents to stop chemotherapy. Her last chemo session was in June, and according to doctors she will die in less than a year without further treatment. But she’s not competent to make that judgment, and there’s also the possibility of a). religious pressure from her parents and the community influencing her “decision,” and b). the fact that chemo makes one sick, which of course would make a child averse to it.  It makes you sick, but often cures you.

And I don’t know how an attorney in good conscience can defend what the Hershbergers are doing.  I know everyone deserves representation, but how could a lawyer with a conscience defend parents whose reckless actions will kill their child?

Andy Hershberger, the girl’s father, said this past summer that the family agreed to begin two years of treatments for Sarah last spring but stopped a second round of chemotherapy in June because it was making her extremely sick.

Sarah begged her parents to stop the chemo and they agreed after a great deal of prayer, Hershberger said. The family, members of an insular Amish community, shuns many facets of modern life and is deeply religious.

Hospital officials have said they are morally and legally obligated to make sure the girl receives proper care. They said the girl’s illness, lymphoblastic lymphoma, is an aggressive form of non-Hodgkin lymphoma, but there is a high survival rate with treatment.

I didn’t know much about the attitudes of Amish toward medical care, but several sites, including Amish America, note that their attitude toward modern medical care is mixed.  Some abjure it; others use it. But in general they use it less than do non-Amish, and often resort to alternative or herbal treatments for religious and cultural reasons. Unfortunately, Sarah Hershberger’s parents apparently belong to the last class, and that will cost her her life.

In An Amish Paradox, Hurst and McConnell detail use of institutional medicine among the various Amish affiliations in the Holmes County, Ohio settlement.

Hurst and McConnell report that Amish are generally less likely to undergo annual checkups or engage in preventative care.  A reluctance to go to the doctor can result from various factors, including  a desire to avoid needless medical costs, a generally higher pain threshold (as reported by doctors treating the Amish) and a failure to understand the importance of, or reasons for professional treatment.

The authors also note that more conservative Amish are less likely to seek medical care, and more likely to delay treatment, especially when physical symptoms are absent or minimal.

There is something ineffably sad about children like Sarah. By accident of birth they are brought up in families afflicted with religious delusions, and there is no way for them to escape (except, perhaps, during or after the famous Amish Rumspringa, when children get a taste of non-Amish life).  They will perpetuate the delusions, and so the cycle continues. And in Sarah’s case, those delusions will take her life. This makes me very angry, and even more so when the religious parents are pretty sanguine about this child abuse, attributing medical-abuse deaths to the will of god. It doesn’t have to be that way. Woo is always bad, but only in religion is it fatal.

****

Finally, this is relevant but a wee bit off topic: a parody “commercial,” from Upworthy, showing what it would look like if vaccines were advertised like other drugs.

And another addendum: Dr. Edzard Ernst has posted a scathing “tribute” to Prince Charles and the royal’s incessant promotion of quackery and “alternative medicine” (Charles just turned 65).

h/t: Matt

37 Comments

  1. Hempenstein
    Posted November 29, 2013 at 9:01 am | Permalink

    Sounds like this one may be more complicated than the typical imposition of the parents’ deeply-held delusions on their child, but probably aided and abetted by the same.

    When I was at the U Pittsburgh Med School, I was at first somewhat surprised to regularly see Amish in the cafeteria there – Amish that as likely came from eastern OH as western PA. (And what did they typically seem to eat there? Hamburgers.)

  2. Richard Olson
    Posted November 29, 2013 at 9:15 am | Permalink

    ‘And I don’t know how an attorney in good conscience can defend what the Hershbergers are doing. I know everyone deserves representation, but how could a lawyer with a conscience defend parents whose reckless actions will kill their child?’

    This seems to me yet one more example illustrating how the faith virus may manifest in a manner as pernicious as an actual terminal physical health ailment.

  3. Posted November 29, 2013 at 9:36 am | Permalink

    As long as children are treated ore like property instead of humans these types of cases will continue. The child’s voice is the one least represented.

    • jeffery
      Posted November 29, 2013 at 11:38 am | Permalink

      A child of ten is not qualified to make these kind of “life-or-death” decisions: she was brought up brainwashed, and her parents made it clear that there was an “option” they approved of which was attractive because it would lessen her discomfort- of COURSE any child would go for that! Maybe you think ten-year-olds should be allowed to decide when they should get married; move out of the house, etc.?

      • Posted November 29, 2013 at 3:06 pm | Permalink

        Of course not. She just needs more than a limited guardian to represent her.

  4. Posted November 29, 2013 at 9:49 am | Permalink

    Utterly angering this is.

    Please — and on this BUY – Nothing Day, too: *for your Winter Solstice gift – giving ?*

    Please make — as ( at least one of) your gifts to them — for the girls and the boys in your lives, however they are to you in your lives ( your own children, nieces, grandsons, friends, colleagues’ progeny, etc ), please make for these kiddos the offers to their mothers and / or fathers to buy for them, whatever after insurance amounts are paid or after the possibility of no insurance amounts are paid, .IS. the balance of $ owed on the full – regimen / to as complete an immunity as is now medically possible of the vaccine against human papillomavirus.

    Offer, too, to help with the scheduling of and the transportation of the kiddo(s) .TO. the clinical facility for the ( so – far: three – injection / months’ – apart ) regimen.

    Sex can — and will — kill. Our kids.

    Sex, over all the World over all of Time, is so not ending. ( Thankfully. ) ( Which is why: I have long maintained that .THE GREATEST INVENTION. in this World over all of Time .IS. chemical birth control: The Pill. )

    An’ we all know what woo – mongers ‘ll do to stop folks like me from pitching such … … science.

    Blue

    • pacopicopiedra
      Posted November 29, 2013 at 6:34 pm | Permalink

      Blue, I think your keyboard is broken.

  5. Gregory Kusnick
    Posted November 29, 2013 at 11:09 am | Permalink

    I know everyone deserves representation, but how could a lawyer with a conscience defend parents whose reckless actions will kill their child?

    A lawyer who defends only people he likes would be a lawyer without a conscience. Conscientious lawyers do not discriminate.

    And I see nothing in the Yahoo News article to indicate that the lawyer defended the parents’ actions. His job is to represent their interests in court, which may include encouraging them to own up to their mistakes.

  6. Posted November 29, 2013 at 11:18 am | Permalink

    I saw a long article on the subject of this Amish girl who begged her parents to stop chemotherapy because it was so horrendously painful to her, and who was spirited away by her parents.

    With regard to vaccines, they have posed a huge problem in third-world countries where couples have for time immemorial had up to ten or twelve children to ensure that at least one or two will survive and reach adulthood to take care of their old parents. As a result of mass vaccination, all the children survive yet couples still produce up to a dozen children, which results in increased poverty and population explosion. It is very difficult to convince these people to limit the number of children they will have, in spite of widespread efforts at educating them about birth control and voluntary sterilization after they have had two or three children. In such countries, vaccination is a double-edged sword, so to speak.

    • gravelinspector-Aidan
      Posted December 1, 2013 at 3:13 am | Permalink

      As a result of mass vaccination, all the children survive

      more of the children survive. There are still plenty of other causes of death around. Looking out of my hotel window while packing this morning (I’m in Benin at the moment) I could see a substantial car crash with ambulances in attendance. I am not aware of any successful vaccines against traumatic injury. Or starvation. Or, for that matter, AIDS (which is killing hundreds of thousands in various parts of Africa, and is probably a regular hecatomb here, did I care to hunt down some statistics).

      yet couples still produce up to a dozen children,

      By a considerable margin the best predictor of decreased family size is (drum roll, please …) female education and waged employment. Once women get that, they’ll generally fight their own fights for contraception, voting rights, healthcare … the little things that make life worth living.
      And of course, that is precisely why so many religions are vehemently opposed to female education, and to the women folk going out of the house or having any degree of economic independence. The old saying about keeping them “barefoot, pregnant and chained to the kitchen sink” is so unfunny because it is so true.

  7. jeffery
    Posted November 29, 2013 at 12:01 pm | Permalink

    The Amish are another bunch of religiously-deluded hypocrites. They wish to hold themselves “separate” from what they view as a wicked, materialistic world, yet their lifestyle is entirely dependent on the technology OF that world: kerosene for their lanterns; steel for their tools, wood stoves, and horse-drawn equipment; fiberglass insulation for their houses, etc., etc. In this typical, male-dominated cult, it’s more about preserving the power of the male elders than seeking any kind of spiritual “purity”- I’ve read much on the child and spousal abuse embedded in this belief system (only the secretive nature of the groups keeps more information about its prevalence out of the news, also a typical cult trait), and many Amish will not hesitate to cheat an “Englisher” (their term for non-Amish) in a business deal.
    Some of the contortions they go through to maintain their particular “vision” of spiritual purity (each group basically has it own interpretation of what they should or should not do) are truly hilarious: Some will use a gas-powered hay baler, but it must be drawn around the field by horses; I’ve seen several wood-working shops powered by a central gas engine, with all the equipment run off it by belts; they won’t drive, but they’re more than happy to pay YOU to drive them to the airport, where they board a jet to go visit another Amish community (inbreeding has resulted in so many genetic problems that many groups have adopted the practice of marrying into groups in other parts of the country); four of five households will go together an get a payphone put in, central to all of the homes, as they can’t have a phone in the house.
    When a group moved into the area in NE Mo. where I lived, the top elder of the group said it was “OK” to use chain saws; as soon as they finished HIS house, he changed his mind and said it was sinful!
    Is not using zippers going to give you a better chance of getting to Heaven?

    • Posted November 29, 2013 at 9:57 pm | Permalink

      That kind of hypocrisy would be amusing if it wasn’t infuriating. What makes a kerosene lamp ok but not a chainsaw? Kerosene lamps were cutting edge technology at some point.

      I see a similar kind of hypocrisy in right-wing, “self-made”, “self-reliant” types. Self-reliant, huh? Where would they be without roads, hospitals, etc? Where would they be without the companies that manufacture the machinery that makes it possible for them to “farm” their land? Oh, but they’re self-reliant! They make their own soap!

      • Diana MacPherson
        Posted November 30, 2013 at 8:01 am | Permalink

        I like the soap analogy. I’ll steal that one I think for myself to use. :)

      • gravelinspector-Aidan
        Posted December 1, 2013 at 3:17 am | Permalink

        They make their own soap!

        Why do I have flashbacks to “Fight Club” and their recipe for making soap? Surely someone must have commercialised that idea by now. The gross-out factor would have guaranteed excellent sales and mountains of free publicity from the “it must be banned” brigade.

  8. Diana MacPherson
    Posted November 29, 2013 at 12:21 pm | Permalink

    I loved that vaccination commercial. Heck, I even vaccinate my dog!

    Lately, someone on my facebook keeps posting woo crap about vaccines. The latest was an article about a family that was 4 generations vaccine free. It’s so irritating!

    • pacopicopiedra
      Posted November 29, 2013 at 6:36 pm | Permalink

      I love that one, too. My favorite part is, “a vaccine is not a prayer…and it’s not a magic…”

  9. Robert Seidel
    Posted November 29, 2013 at 12:35 pm | Permalink

    > I know everyone deserves representation, but how could a lawyer with a conscience defend parents whose reckless actions will kill their child?

    I see I’m the third one to jump on this. She does it because the next ones to “not deserve” representation might be parents whose child died out of carelessness.

    She does it to keep the system from eroding. It’s easier (and more ethical) to represent everyone instead of always negotiating the boundaries. It’s like the “separation of church and state. Full stop” thing.

    (By the way, I’m always shocked to see the systematic de-sympathizing of villain’s lawers in American TV. I guess a lot of your fellow citizens don’t get the “everyone deserves representation” part.)

    • Posted November 29, 2013 at 12:48 pm | Permalink

      Yes, yes, I know. After all, I was on the O.J. Simpson defense team (voluntarily refusing pay), and did so because even the rich and odious deserve proper representation. It helps protect the system.

  10. jaxkayaker
    Posted November 29, 2013 at 1:01 pm | Permalink

    “Woo is always bad, but only in religion is it fatal.”

    Anti-vaxxer woo has been fatal and is not exclusively religiously-based. Homeopathic treatments are potentially fatal woo and not based in religion. People are irrational for many reasons and on many topics not based in religion.

  11. Richard Olson
    Posted November 29, 2013 at 1:49 pm | Permalink

    I’m glad for the number of comments defending representation of defendants, regardless of the nature of charges brought against them. I completely agree that unhindered defense of any person charged with a crime is vital to a system of fair jurisprudence, and regret that I wrote in comment 2 above that the defense attorney is responsible for the fate of the child in this case.

  12. Sastra
    Posted November 29, 2013 at 2:17 pm | Permalink

    Over at Respectful Insolence cancer doc Orac has been blogging about the science behind this case … and the irrationality of the way this story is being framed by both the media and the alties. Two of the earliest articles can be found here and here.

    In that second one (“Children are not their parents’ property”) Orac points out how religion isn’t helping this issue:

    This belief that parental rights over their children are absolute and inviolate is not only common, but it takes some insidious forms, particularly when the abuse of children is based on religion. Given the strong tradition of religious freedom in this country that is inscribed in our very Constitution, it is understandable that people don’t want the government telling them how to practice their religion or interfering with their religion. However, as with all rights, the parents’ right to raise their children as they see fit has to be balanced with the rights of the child to life. When the exercise of a parents’ religion endangers the life of a child, the life of the child takes precedence—or should. It doesn’t always.

    • Sastra
      Posted November 29, 2013 at 2:20 pm | Permalink

      There are more articles from that site here (Chris Wark spins the story of the Amish girl with cancer whose family refused her chemotherapy”) and here (“Sarah Hershberger and Zija MLM.”)

  13. Posted November 29, 2013 at 3:48 pm | Permalink

    Eleven years ago now my oncologist grew fairly angry about the common perception that “chemotherapy makes you sick”. According to him, the (then) newer drugs mean that doesn’t have to happen at all. I underwent six courses and wasn’t sick a minute – and my insurance company wouldn’t even pay for the (then) newest drug, so I had to take one slightly less new.

    • Diana MacPherson
      Posted November 30, 2013 at 7:24 am | Permalink

      No you wake up!

      • Richard Olson
        Posted November 30, 2013 at 8:00 am | Permalink

        I wonder how well received Jenny Mcwhatever’s anti-vaccination campaign would be at the onset of a polio epidemic next August that results from, say, a plane that departed Syria in mid-June with infected passengers who went through a number of major airports on multiple continents

        • Diana MacPherson
          Posted November 30, 2013 at 9:08 am | Permalink

          Probably badly by reasonable people but by her and her followers by complete cognitive dissonance. I can’t believe the genitor of this myth, the infamous Andrew Wakefield, is still denying that he was wrong & has been given voice in Texas media, even after the measles epidemic in Wales.

        • gravelinspector-Aidan
          Posted December 1, 2013 at 3:25 am | Permalink

          say, a plane that departed Syria in mid-June with infected passengers who went through a number of major airports on multiple continents

          I don’t think that polio is quite that infectious. It’s fairly nasty, but not to that level.
          My connection is pretty poor here, so I’m not going to try searching YouTube for a clip of the opening credits to the British TV series from the 1970s called “Survivors”. But the imagery of the dropped Erlenmeyer flask followed by rapidly accumulating piles of visa/ entry stamps was so … arresting.

          • Richard Olson
            Posted December 1, 2013 at 7:01 am | Permalink

            I don’t have any idea how infectious polio is, either. The idea I clearly fail to communicate effectively is one that possibly only registers with me, and that because it is not a very good idea, but it is this: infectious disease outbreak remains rare in the US due to decades of successful vaccination efforts. Anti-vaccination proponents are recently successful enough in their efforts that greater potential exists for ever larger outbreaks of measles, tb, etc., each passing year. I suspect, but have no evidence to support as a claim, that institutional memory of these diseases faded due to the very success of vaccine regimens, and that most if not all anti-vaccine advocates are simply ignorant of the horrible potential of viruses they forgo protection from. I suspect, believe even, these people would swiftly abandon the anti bandwagon given first-hand experience with the outcomes of viral diseases.

            I experience fairly severe claustrophobia, and my memory is it appeared after repeated visits where I watched the elderly polio victim confined to the iron lung who shared a great-uncle’s retirement home room.

            Ever since McCarthy’s anti-vacc movement took hold, I have wondered if a polio outbreak would swiftly convert even the most ardent anti-vaccination true believer. I know. Projection. Not sound reasoning, obviously; perhaps at best a forlorn hope these people come somehow to grips with reality before their actions harm their own offspring or others in society. May I add I hope like hell polio is unable to be transmitted as easily as I suggest from Syria, where it has a substantial presence.

            • Diana MacPherson
              Posted December 1, 2013 at 7:46 am | Permalink

              I think you are probably right and most anti-vaccination types would change their minds swiftly as evidenced by the massive lineups to receive the MMR vaccine in Wales when there was a measles outbreak.

            • gravelinspector-Aidan
              Posted December 6, 2013 at 10:30 am | Permalink

              I agree with Diane that many of the anti-vaccination “small fry” are simply ignorant of the toll that viral diseases used to inflict on people. However, I suspect that some of the “high ups” in the anti-vaxx movement are either psychotic, or are deliberately reckless of their effects on public safety in the pursuit of book/ video/ speaking tour sales. I find it hard to believe that such well-organiesd, profit-driven peoepl can actually be so ill-informed. If one of them appeared in front of a jury containing me, they’d have to work really hard to convince me of an innocent explanatino for their actions.
              Incidentally, as something approaching the website’s (it’s better than a blog, you know!?) speleology spokesman, I can asure you that your claustrophobia is all in the mind, and given sufficient motivation, you can get over it. I’ve seen plenty of people claim claustrophobia as an excuse to not go caving, but I’ve never seen one who really cared once we’d got them underground.

  14. Posted November 29, 2013 at 9:19 pm | Permalink

    Reblogged this on Biofin.

  15. gravelinspector-Aidan
    Posted November 30, 2013 at 6:06 pm | Permalink

    (except, perhaps, during or after the famous Amish Rumspringa, when children get a taste of non-Amish life).

    Never heard of the Rumspringa until tonight.
    That would be a couple of weeks before the annual up-tick in reported STIs in the areas around the Amish, and purchases of RU486?
    Actually, purchases of RU486 by guys. Thinking that if they take the pill, it’ll get the girl un-pregnant without sin. Those Amish – such a quaint family life!

  16. marcusa1971
    Posted November 30, 2013 at 6:11 pm | Permalink

    Prince Charles has received a lot of criticism over the years, but in all fairness, he has deserved every bit.

  17. marksolock
    Posted December 1, 2013 at 6:31 am | Permalink

    Reblogged this on Mark Solock Blog.

  18. Posted December 2, 2013 at 6:11 am | Permalink

    Law enforcement should hunt down the parents as they would child murderers – in fact with even more resources and urgency.

  19. Diane G.
    Posted December 13, 2013 at 12:33 am | Permalink

    sub


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