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The Justina Pelletier Boston Children's Hospital experience, as reported by The Boston Globe, demonstrates that parents and children have no substantive rights in the matter of medical child abuse allegations. Parents who follow physicians' recommendations may be charged with abuse and lose their children to state welfare agencies.

Initiators of the medical child abuse theory, Drs. Carole Jenny and Thomas Roesler, posit that parents, especially mothers, are able to coerce professionals into performing dangerous surgery and prescribing unnecessary drugs. If this dubious concept has any merit, the state is accusing the wrong party. The perpetrators are the medical practitioners.

When Dr. Alice Newton, head of Boston Children's Hospital child protection unit, levied charges of medical child abuse in February 2013 she targeted Justina's parents, not the child's primary physician, Dr. Mark Korson. In Dr. Newton's professional opinion, Lou and Linda Pelletier were the cause of Justina's illness, not the mitochondrial disorder identified by her physician. Defending her diagnosis, Dr. Newton said “It’s the kind of diagnosis vulnerable to manipulation by parents.”

Dr. Newton was able to make her somatoform disorder diagnosis in an improbable three days and it was this judgment that prompted the Department of Children and Families to petition Juvenile Judge Joseph Johnston to revoke Pelletier parental rights.

A medical dispute case e.g. Boston Children's Hospital versus Tufts Medical Center is complicated and critically so when a child's health and well being is under consideration. Judge Johnston did not question the validity of the BCH charges and because of his actions the Pelletiers lost custody and Justina became and remains a ward of the state.

Justina suffered cruel tribulations while under Judge Johnston's protection. Examples are: change in prescription regime, no contact with her former attending physician, a ten-month confinement in BCH's psychiatric ward, absence of education/religious providers, and an hour a week with her parents.

Because Justina is a state ward, Lou and Linda Pelletier have no knowledge of their daughter's current treatment plan or whether she has been prescribed psychotropic drugs. Judge Johnston decided last month that Justina may not have any physical contact with her parents.

Under existing law, BCH and other like institutions are permitted to subject children to this treatment and more. As referenced, children under state care may be used in drug trials and medical research. The following is extracted from Boston Children's Hospital Clinical Investigation Policy and Procedure Manual:

Children who are Wards of the state may be included in research that presents minimal risk 46.404 (50.51) or greater than minimal risk with a prospect of direct benefit 46.405 ( 50.52) of subpart D

Children who are Wards of the state may be included in research that presents greater than minimal risk with no prospect of direct benefit (46.406 (50.53) or 46.407 ( 50.54) only if the IRB determines and documents that such research is...

Please continue reading the hospital's manual for further details. The abbreviated IRB term refers to Institutional Review Board.

It may seem implausible that minors are test products, but these industry-conceived programs have been federally sanctioned for decades.

A recent study commissioned by the Georgia Supreme Court found that anywhere from 26% to 43% of foster care children have been prescribed psychotropic drugs. Most, 45-75 %, of these medications are not FDA approved for use in children. In other words pharmaceutical reps via physicians are prescribing these behavioral agents off label. This is definitively medical child abuse.

Boston Children's Hospital experimentation practices on "taken children" are detailed in the Kathleen Higgins complaint letter and The Boston Globe articles: " A medical collision with a child in the middle" and " Frustration on all fronts in struggle over child’s future."

Originally posted to Lynne Vogel on Sun Apr 13, 2014 at 06:20 PM PDT.

Also republished by Community Spotlight.

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Comment Preferences

  •  Tipped and recced this. (8+ / 0-)

    This is too scary for any words.

    And the doctors are never held accountable. Never.

    How many doctors have their licenses pulled each year? How many parents lose their children by some doctor's orders?

    I'd wager the latter number is orders of magnitude larger.

    "It's high time (and then some) that we put an end to the exceptionalistic nonsense floating around in our culture and face the fact that either the economy works for all, or it doesn't work AT all." -- Sean McCullough (DailyKos user thanatokephaloides)

    by thanatokephaloides on Sun Apr 13, 2014 at 07:28:12 PM PDT

  •  Broad strokes you are painting with. (17+ / 0-)

    Medical child abuse is a real thing.  I just spent an hour reading the comprehensive Boston Globe reporting. This case is about as clear as mud and it sounds like good communication skills would have gone far in mitigating the issues at hand.  But between egos and strong personalities it looks like the main person who loses here is Justina.

    Thanks for bringing my attention to the case.

    I want to live in a world where George Zimmerman offered Trayvon Martin a ride home to get him out of the rain that night. -Bishop G. Brewer

    by the dogs sockpuppet on Sun Apr 13, 2014 at 07:31:09 PM PDT

  •  according to this video (8+ / 0-)

    http://www.bostonglobe.com/...

    In 5 cases at this hospital parents lost custody... a team who looks for "signs" of medical abuse.. after months in DCF custody Justina was "still relying on a wheelchair to get around"... Justina has 3 sisters at home - apparently no accusations of abuse have been leveled at the parents with regard to them.

  •  I'm not sure what you mean when you (3+ / 0-)
    Recommended by:
    ER Doc, penguins4peace, Simian

    say her parents do not have any substantive rights.  Of course they do—they presumptively have the right to custody of their child.  That's a constitutionally protected right.  Obviously that right isn't absolute, and when there's a question of whether they should have custody of Justina they're entitled to a number of procedural protections as well.  

  •  I'm a child caregiver in Boston and know this (19+ / 0-)

    I get to know perhaps more families than the average person (not more than a gregarious stay at home parent, say).
    I know three families that had trouble with Children's Hospital accusing them of child abuse.

    When I met Amy she was 2 years old and profoundly brain damaged and disabled.  She had microcephaly-her head looked unusually small. SHe could smile but not roll over sit stand walk speak or see. She had little control over he body and had a foley (urine) catheter in, a colostomy bag for pooping and a g-tube for feeding. She could not eat or swallow without choking. She was on oxygen and had lung damage. At night she was hooked up to a urine catheter a feeding tube, oxygen and two different monitors. No wonder she slept fitfully.

    Amy was born a seemingly healthy infant but within a week her young ansinnexperienced, but also bright and loving parents were concerned she wasn't peeing enough. It is somewhat hard to tell with the superabsorbant modern diapers. They'd been told to call a maternity nurse if they had any questions/issues. They were poo-pood and told they were just new parents over-reacting. So they ingnored their own gut feeling until the baby was acting uncomfortable. Then they brought her to the Children's Er AGAINST medical advice. She was catheterized, urine came out. Then they were sent around for tests (ultrasound of bladder which didn't have anything alarming). Finally she was admitted after 14 hours and the parents were encouraged to sleep. They were woken by the news that their previously healthy baby had coded-her heart stopped. It took many minutes for it to start again and she'd suffered profound brain damage as a result. A scan confirmed that her bladder had exploded. She'd had a condition where it wasn't draining properly. No one in the ER put it together

    Here's the clincher. Immediately doctors told the parents they must have brought her in in that condition. Gobsmacked, the mom had the supreme presence of mind to run to the ER and grab all the medical records. SHe was a fierce mother. Talk continued and DSS was called by doctors. It went on for hours because S. didn't want the documents to leave her hands even to be photocopied...finally they let her do it herself with them watching. And of course, it proved that they had basically let their baby almost die and ruined her life. No apology was given

    These parents were offered a settlement of a few million dollars and they took it. They knew going to trial would take years and a child like theirs needed money immediately for home medical supplies that at that time insurance wouldn't cover. (eventually as a disabled child they were able to get her on MEdicaid but she still needed supplemental supplies at all times). Ironically, Children's Hospital in Boston is one of the best children's hospitals in the country and certainly the best in our area. They are by far the most comprehensive and best to take care of kids like AMy.

    SO poor parents have to go back repeatedly to get their child care at this place that almost killed her, damaged her profoundly, wouldn't own it and then Blamed the parents!

    I've never told this story publically before but it gives me a mixed view of Children's. I know they have saved many lives as well and many dedicated kind people work there. I got people to do heart surgery free on a poor child's heart at one time.

    But they seem to have an overzealousness issue with child abuse. And the story of these parents (who I worked with/for) sticks with me until today. I will never forget it. They new AMY as she would have been for only I think 10 days. It is so very sad. I don't even know if she's still alive...every time she got a cold she'd be hospitalized with pneumonia in the ICU.

  •  Judge (3+ / 0-)

    I would think that the Judge would have found his own expert to give an opinion on these 2 medical opinions. It is not reasonable to accept the self serving positions of each of the parties to this case.

    I was on a jury about 30 years ago involving child custody. The county and the mother each had a lawyer and the child was appointed a lawyer by the court to protect the child's interest. He was very good. In the end we gave custody to the county because of the mother's neglect.

    The Judge was sharp and in control and the lawyer appointed to the child was really on his game. I think every question he asked and the answer made a strong unforgettable point.

    If this account is remotely accurate this sounds like a bad piece of work - compared to my limited experience.

    •  Slate article mentioned a guardian ad litem (4+ / 0-)

      and his (her?) report agreed with the parentectomy.

      One hospital here has made a serious error. Unfortunately, the privacy rules make it hard to tell which one that is, from the newspapers.

      •  Well, if Children's is right, that this condition (4+ / 0-)

        is all in the child's head, wouldn't you expect her condition to have disappeared, or at least improved, over these many months in psychiatric care?

        The girl is still having significant digestive problems. Children's simply won't admit they made a mistake and let her get actual medical treatment for these problems.

        •  Maybe — I'm not a doctor (0+ / 0-)
          wouldn't you expect her condition to have disappeared, or at least improved, over these many months in psychiatric care?
          Maybe, but psychiatric care isn't like an antibiotic. It may not work fast. It may be the wrong type of psychotherapy. Sometimes psychotherapy doesn't induce any improvement, even in illnesses like depression and anxiety disorder. There's a possibility of long-term or irreversible damage, either from parental mental abuse, or for that matter from rather drastic medical interventions for the gastrointestinal symptoms.
      •  Much respect to GAL (0+ / 0-)

        However, I have seen situations where the GAL and others have been misled. It is difficult sometimes to get a clear assessment when there are contradictory opinions about care. That happened with my elderly mother, in a different kind of case, and ultrimately the legal system did reach the right decision but it took time and appeals.

        •  I have seen far more cases where GALs are (0+ / 0-)

          pure evil who are totally manipulated by a narcissistic or borderline personality disordered parent than any that got it right.  And I have had a lot of friends and clients who have gone through divorces that the GAL nearly destroyed the childrens' lives with their errors.  One of the most egregious in my area is not implicated in a case that ended in the child killing someone because she made the wrong call.

    •  The judge did that. She appointed a GAL. nt (0+ / 0-)
  •  Major Hospitals Kill Stories Like This Constantly (5+ / 0-)

    we have a very prestigious cancer center close by, and the are really awful scandals every couple years that are mentioned only briefly by the press.

    Men are so necessarily mad, that not to be mad would amount to another form of madness. -Pascal

    by bernardpliers on Sun Apr 13, 2014 at 11:37:23 PM PDT

  •  To cut off a adolescent from her family (6+ / 0-)

    and all her friends, and incarcerate her in a locked psych ward? That's the real child abuse here.

  •  So is the mom gifted with the ability to control (2+ / 0-)
    Recommended by:
    No one gets out alive, oslyn7

    the mind of a doctor? Because I am at a loss to understand how the doctor is getting out of being responsible for their part?

    Did the mom hold a gun to the doctor's head? Threaten to someone?

    It sounds to me like the child needs to be assigned a Guardian ad litem And also, there are children's rights organizations that need to be notified.

    http://www.childrensrights.org/

    "We are a national advocacy group working to reform failing child welfare systems on behalf of the hundreds of thousands of abused and neglected children who depend on them for protection and care."

    "It were a thousand times better for the land if all Witches, but especially the blessing Witch, might suffer death." qtd by Ehrenreich & English. For Her Own Good, Two Centuries of Expert's Advice to Women pp 40

    by GreenMother on Mon Apr 14, 2014 at 05:13:09 AM PDT

  •  My son had his first seizure at 9. (13+ / 0-)

    It was the little tiny half-second kind, but I had a really strong hunch it was a seizure. I told his mom, because he was covered under her insurance, and she took him... to a psychologist.

    Naturally, the psychologist diagnosed "stress," and with a little prompting from my ex, decided it was due to my bad parenting. There was actually talk at one point of supervised visits.

    The seizures continued, and at last his mom thought to take him to a neurologist. Turns out my son is epileptic. Who could have guessed?

    To me, the lesson is that psychologists aren't qualified to diagnose everything - but a few, at least, think they are.

    Early to rise and early to bed Makes a man healthy, wealthy, and dead. --Not Benjamin Franklin

    by Boundegar on Mon Apr 14, 2014 at 05:53:42 AM PDT

  •  I've been puzzling over this case for ages. (11+ / 0-)

    It really seems the parents are being punished because they have abrasive personalities and medical and judicial personnel think they're assholes.

    The parents are really getting the shaft here, as is Justina.  They came to Tufts medical center from Connecticut to get help for their daughter's condition.  They got a diagnosis and a treatment plan.  The doctor transferred to Children's, Justina was re-assessed, and has been in diagnostic Hell ever since.  

    Maybe her disorder is psychological in nature.  However, why is the former diagnosis so fully dismissed?  Was the first doctor incompetent?  Isn't it possible she has a mitochondrial disorder and some psychological disorder?

    Her parents are fighting like terriers for what they believe is her best interest.  For which they're being treated like abusers.  

    So sad all around.  

    We do not forgive. We do not forget. The whole world is watching.

    by Tracker on Mon Apr 14, 2014 at 06:10:12 AM PDT

    •  Yes - a complicated situation (6+ / 0-)

      I have similar thoughts.

      What happened to Dr. Korson, the one who originally diagnosed mitochondrial disorder?  Did the Korson decide his original diagnosis was wrong?  Did Korson ever collect and lab data or other physiological evidence to support his original diagnosis of mitochondrial disease?

      Did Dr. Korson tell the Pelletiers that he was changing his diagnosis?  Was Korson informed by the psychiatrists at Children's Hospital that the Pelletiers were suspected of having some sort of mental disorders - and did that news cause Korson to re-think his original diagnosis, and abandon his care of the child?  

      And if the Pelletiers are thought to have a mental disorder, shouldn't that diagnosis be made by a psychiatrist only after a formal meeting with the Pelletiers?    

      It seems to me the court is the one acting irrationally here.  The doctors at Children's Hospital have only one side of this story - Dr. Korson and the Pelletiers also have a side that concerns diagnoses of both physiologic and psychiatric disorders.

      There must be large parts of this story that have not been reported - perhaps having to do with the abrasive behavior of the Pelletiers.  But if my child was desperately ill, I would be pretty unpleasant to deal with as well.  

      "The fool doth think he is wise: the wise man knows himself to be a fool" - W. Shakespeare

      by Hugh Jim Bissell on Mon Apr 14, 2014 at 06:44:48 AM PDT

      [ Parent ]

      •  Ah - Korson did NOT abandon Pelletier (8+ / 0-)

        So, I'm reading this Boston Globe article on the Pelletier case (first part - here: http://www.bostonglobe.com/...).

        It turns out that Dr. Korson did not abandon his patient Justina Pelletier or his original diagnosis of mitochondrial disease.  He was excluded from participating in Pelletier's care by the Boston's Children's Hospital (and the courts, I  guess).

        Dr. Korson apparently disagrees with the Children's Hospital diagnosis that J. Pelletier has a psychiatric condition worsened by her parents; Korson continues to think his patient has mitochondrial disease.

        This makes it very curious that the court has sided with the doctors at Children's Hospital, when other equally expert doctors disagree.

        F'instance, Dr. Alice Newton, the psychiatrist at Childrne's Hospital that filed the motion for the courts to break up the Pelletier family (based on the idea that the parents are worsening the child's psychiatric illness), has never even met with Justina Pelletier or her parents.  It is literally impossible to make a accurate diagnosis of a psychiatric condition without actually meeting the person you are diagnosing.  Yet, the court holds this medical opinion as the correct one in the face of other contradicting medical opinions.

        "The fool doth think he is wise: the wise man knows himself to be a fool" - W. Shakespeare

        by Hugh Jim Bissell on Mon Apr 14, 2014 at 07:50:01 AM PDT

        [ Parent ]

        •  That was indeed mind-boggling--for this psych (3+ / 0-)

          to make a diagnosis based on other reports alone.
          Incredible, when she did have the opportunity to meet all the parties involved.

          Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

          by peregrine kate on Mon Apr 14, 2014 at 11:42:50 AM PDT

          [ Parent ]

          •  Sorry - My Error (7+ / 0-)

            I must apologize: I wrote in my previous comment that Dr. Newton is a psychiatrist.  This is incorrect: Dr. Newton is a pediatrician, and was head of the child protection team at Children's Hospital.

            And it makes some sense that as head of the child protection team that Dr. Newton would avoid meeting parents and children so as to maintain a position of unbiased advocacy for the child's best health.

            The child Justina Pelletier was diagnosed as suffering from a psychiatric disorder by (if the Boston Globe reported this correctly) a psychologist at Children's Hospital.

            Still and all, as a pediatrician, Dr. Newton should have some familiarity with the symptoms, diagnosis, and treatments for mitochondrial disease in children - including the fact that the symptoms of mitochondrial disease can vary widely and untreated mitochondrial disease can be fatal in some cases.

            Despite this knowledge, Dr. Newton's actions resulted in the child not receiving treatment for mitochondrial disease, but instead getting treatment for a psychiatric condition.  And what is worst is that the child continues to be suffering from her illness with little improvement, out of school and confined to a wheelchair.  Despite the interventions of Children's Hospital.

            Say what you will about the Pelletier parents, but when they were custodial care-givers and guardians of their child, the child attended school and was walking.  It seems to me the interventions of the state have resulted in a worsening of the child's condition and circumstances.

            "The fool doth think he is wise: the wise man knows himself to be a fool" - W. Shakespeare

            by Hugh Jim Bissell on Mon Apr 14, 2014 at 12:14:38 PM PDT

            [ Parent ]

            •  A vet can't make a diagnosis or even (1+ / 0-)
              Recommended by:
              417els

              prescribe ordinary heartworm medication without seeing the dog in person.

              Yet a pediatrician can decide that a child's symptoms are all in her head and recommend she be separated from her parents and incarcerated in a locked psych ward without even seeing the child?

              Go figure.

    •  If her disorder is psychological (3+ / 0-)
      Recommended by:
      Tracker, catwho, alice kleeman

      wouldn't you expect some improvement since she has been blocked from her parents and receiving psychiatric care all these many months? Yet, her physical symptoms persist.

      •  if it is mitochondrial..... (1+ / 0-)
        Recommended by:
        ivorybill

        and the sister has the same symptoms, shouldn't there be a clearer diagnosis available?  I think it could be a mixture of both.

        You shall know the truth, and the truth shall make you mad. Aldous Huxley

        by murrayewv on Mon Apr 14, 2014 at 11:50:14 PM PDT

        [ Parent ]

        •  The diagnosis is clear (0+ / 0-)

          to someone with a background in diagnosing mitochondrial disease.

          That doesn't describe the mental health professionals who decided that this was all in the girl's head, though. How is it possible for them to rule out a physical disease? That's not their area of expertise!

          Would you go to a psychiatrist for a definitive diagnosis on heart disease? Obviously, no. They might tell you it's all in your head, too.

    •  The parents have really not helped their own (2+ / 0-)
      Recommended by:
      ivorybill, 417els

      cause.  By threatening people and refusing to comply with the guidelines, they made it really hard for the legal system to rule in favor of re-unification.  If they could have just sucked it up a little bit, they probably could have avoided this whole protracted battle.

      But now I sound like I'm "blaming the victim" which is not my intention.  There is plenty of blame to go around...

      Quality communication techniques would have mitigated a lot of this.  All docs need training in crucial conversations and this is exhibit A.

      I want to live in a world where George Zimmerman offered Trayvon Martin a ride home to get him out of the rain that night. -Bishop G. Brewer

      by the dogs sockpuppet on Mon Apr 14, 2014 at 08:17:15 PM PDT

      [ Parent ]

      •  That's fairly typical in these kinds of (0+ / 0-)

        wrongful child welfare cases. In order to get your kid back, you have to admit you did something wrong, even if you didn't, and agree to bogus conditions, even if they are actually harmful to your child. I've never heard of any CPS anywhere admitting they made a mistake in taking a child out of any home.

        It's a "when did you stop beating your wife" scenario. You can't win.

        The problem here, of course, is that conditions that require the parents not to treat their child's mitochondrial disease could actually kill her.

        Hard for any loving parent not to be "difficult" in a situation like that.

  •  An Amazing and scary version of these events and (4+ / 0-)

    others surronding Dr. Newton are reported here with added information on other legal investigations on and about theis case and Dr. Newton whose groups files over 300 similar cases a year.

    Life is just a bowl of Cherries, that stain your hands and clothes and have pits that break your teeth.

    by OHdog on Mon Apr 14, 2014 at 10:28:55 AM PDT

    •  Thanks for that link (3+ / 0-)
      Recommended by:
      alice kleeman, OHdog, elmo

      The more I look at this the worse it gets.  From the link:

      THE GUIDELINES

      On February 13, 2013, “guidelines” for Justina’s care were drafted by Boston Children’s Hospital. The hospital’s approach to her care, according to the document, would be to: “Set strict limitations on medical discussions with the family and eliminate interaction with providers outside our hospital, except as indicated by medical team in relation to clinical picture and collaborative information.”
      ...
      iii No medical discussion to be held in the room or within patient’s hearing.

      iv No dictation of care or calling in consult teams or second opinions on own accord.

      As if that weren’t enough, the Goals of Admission state that Children’s Hospital intended to: “Reduce the number of providers to a core team in order to reduce potential confusion from use of multiple providers across many institutions and state lines.”

      This obviously excludes Dr. Korson. More like a kidnapping than medical treatment.
  •  The BCH "doctors" should be in jail. (0+ / 0-)

    Obama: Pro-Pentagon, pro-Wall Street, pro-drilling, pro-fracking, pro-KXL, pro-surveillance. And the only person he prosecuted for the U.S. torture program is the man who revealed it. Clinton: More of the same.

    by expatjourno on Mon Apr 14, 2014 at 01:42:05 PM PDT

  •  There is no such thing as (3+ / 0-)

    just mitochondrial disease! That is a term for a large group of dysfunctions of the mitochondria. Even type 2 diabetes can be a mitochondrial disease. This young women should have a specific diagnosis. That she doesn't is beyond troubling.

    Following this case I note that the older sister does have a definitive diagnosis after having had a muscle biopsy. So why has Justina not had this basic diagnostic test done to confirm her condition?

    It may not be medical child abuse but it sure looks like it could be.

    •  There certainly IS "medical child abuse", but (0+ / 0-)

      the question is, was it from the parents, or is it from the doctors?

      Don't we all know what road is paved with good intentions?

      If it's
      Not your body,
      Then it's
      Not your choice
      And it's
      None of your damn business!

      by TheOtherMaven on Tue Apr 15, 2014 at 07:31:02 AM PDT

      [ Parent ]

      •  The problem is (1+ / 0-)
        Recommended by:
        Cardinal Fang

        the only side we get is from the parents. The hospital and the state are obeying the law and not discussing the case. They could have compelling evidence against the parents but since it would be in the young woman's medical records be unable to discuss it.

  •  I don't know how we could possibly understand (1+ / 0-)
    Recommended by:
    Susan G in MN

    who is right and who is wrong in this case, when we are only hearing one side. The hospital can't say anything. They might have reams of persuasive evidence, or they might have nothing. We can't know.

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