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Trapped in the System

March 27, 2014

There is a story I have been following for some time through conservative and Pro-Life news sources. When I initially considered writing about it here, I was shocked at the lack of coverage in mainstream news sources. Even today, I was debating between doing a roundup of miscellaneous links or signal-boosting the story. In light of the latest development, the boost won out. People who warn of government overbearance are often told they’re loony because it hasn’t happened, isn’t happening, and won’t happen. We’re very good at convincing ourselves that bad things happen to other people. Justina was not the first person, nor will she be the last. She is the most visible person, for now so it is her story that I am telling.


Justina, Linda and Lou Pelletier (photo via A Miracle for Justina)

Imagine your child is sick. Their symptoms indicate a systemic disease, but nobody can figure out what’s wrong. You subject them to increasingly invasive tests in the hope of finding answers. You’re about ready to give up when you find a specialist who makes the diagnosis of mitochondrial disease. According to MitoAction, about 1/2000 children will develop mitochondrial disease by age 10. Diagnosis is a challenge because the symptoms are shared by many diseases, and that’s not counting the doctors who write you off as crazy, lying, or fat.

Because your body is already running on fumes, any illness needs to be taken very seriously. In Justina’s case, it was the flu that brought her to Boston Children’s Hospital on February 10, 2013. Although her main doctor is at Tufts, her gastroenterologist had just transferred to Boston. If your expectation would be to take your child to the hospital, get admitted, and see the GI doc ASAP, you’d be wrong. What actually happened was a neurologist overruling her diagnosis of mitochondrial disease because he believed it didn’t exist. He diagnosed somatoform disorder, hijacked the admission, and she was placed in a psychiatric ward. The Pelletiers tried to get Justina out of Boston Children’s and to a facility that would treat her illness. Four days later, Justina became a ward of the state.

Her parents tried to play nicely with Boston Children’s Hospital and the Department of Children and Families, who currently have custody of Justina. Once the state got involved, the Pelletier’s lives went to hell. Parental visitation was supervised by local law enforcement. Phone calls home were monitored. Justina resorted to smuggling notes out in origami and her parents were forbidden from taking photos. At one time they were allowed daily visits, now they’re permitted weekly visits. The Pelletier’s only recourse is through the court, where they were placed under a gag order. Imagine having your child taken away because you were trying to do the right thing, and then being unable to tell anybody.

They complied with a gag order for nearly a year before Lou and Linda started to speak out in specifics about what had happened to them. In response, the court moved to hold them in contempt. Enough people were listening to persuade the court to drop the charges. Not only are the Pelletier’s running out of money and morale, but Justina is running out of time. Over the past year she went from an active teenager living at home to being wheelchair-bound, hospital-bound, and grossly mistreated in the state’s care. Her family fears she is experiencing sepsis while the DCF believe it’s all in her head. Because they don’t have custody, her parents aren’t informed of Justina’s treatment. Despite a court order issued earlier in the month for Justina to be evaluated by her Tufts team, she has yet to see any of the physicians who were treating her mitochondrial disease. On March 26, a judge ruled that her parents have no chance of taking custody for six months because they he deemed them unfit.

Why are they unfit? Justina’s dad called the hospital staff Nazis. He’s threatened legal action against another organization who would potentially take custody of his daughter. He’s threatened to call the FBI. You know, things an outraged parent might do. And of course, they vehemently disagree with the somatoform diagnosis. Returning Justina to her parents’ custody would mean resuming treatment for her mitochondrial disease rather than continuing psychiatric treatment for somatoform disorder. In short, they dared question the wisdom of the state. View the ruling for yourself.

Surely there’s something else, right? Hospitals don’t just kidnap children, states don’t just isolate children from their parents, and judges don’t just refuse to issue rulings for the hell of it. Does it complicate matters knowing Justina has a port in her abdomen for colon irrigation? If this was a case of medical child abuse, you’d expect Justina to be better away from her allegedly barbaric parents yet that’s not the case. The Pelletiers have three other children, including another daughter who also suffers from mitochondrial disease. None of them have accused their parents of being abusers. The DCF in their home state of Connecticut did a home visit and found nothing.

As I said, this is not an uncommon story. Browsing through MitoAction, I saw several families who’d lost their children in Houston. In Alaska, parents lost custody of their child over a diagnostic disagreement. How many times is this happening that we don’t know about because the parents are silenced? It’s hard enough being taken seriously by doctors as an adult. As a minor, you have no rights and no voice. If the rulings against the Pelletiers are allowed to stand, it sets a precedent to silence the parents as well.  Justina’s case is just the highest profile one, for now. Once the state is involved in an abuse allegation, parents have very little recourse. It’s a guilty-until-proven-innocent paradigm and innocence is very difficult to prove. Remember the debate over whether a fat child was indicative of abusive parents?

You can follow A Miracle for Justina on Facebook for updates from the family. Donations to their 501(c)3 can be made through PayPal here.

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23 Comments leave one →
  1. March 27, 2014 1:43 pm

    If you’re gonna call me out, call me out. None of this passive aggressive nonsense.

    This case is FAR more complicated than the future dystopian healthcare model of forcing people to diet or refusing them healthcare. And this kind of dispute between parent and state are not new or unusual. The state assumes custody of children for all kinds of reasons, including obesity. I did some reading up on sites other than The Blaze and I’m kind of confused as to when you say this isn’t in the “mainstream media.” I found articles on ABC News, Huffington Post, Slate, Esquire, and, of course, Boston Globe,

    The main problem seems to be a disagreement over the diagnosis. Boston Children’s Hospital think it’s psychosomatic, while Tufts thinks it’s mitochondrial disease. From what I’ve been reading, they treated her in a psych ward and when her health improved, they proposed moving her to a facility in Connecticut to continue treatment, the Pelletier’s refused to negotiate and he was verbally abusive to hospital and state workers. And the fact is that if people are evaluating your fitness as a parent and you can’t control your temper, even if you believe the situation is unjustified, then you are harming your own case. The ruling judge in that final decision you cited blamed both sides for how things went down, but was particularly concerned about the parents’ behavior.

    I think the way forward is to assess her current health under the state’s treatment. They’ve had a year to treat her as having a psychosomatic disorder. So, have they resolved the issue or has her health continued to deteriorate? If she has untreated mitochondrial disease, then it will deteriorate and I have not seen ANYTHING about that in any publications (correct me if I’m wrong). But there are parents who do misuse medical treatment in a form of Münchausen syndrome by proxy and if the State suspects something going on, they have an obligation to protect the child. Of course the parents are going to be outrage, but there is a system in place to both protect children and appeal for release from protection and it’s there because child abuse is a major problem in this country. So unless you’re suggestion that all family services cease and desist their child protection services, which is a reckless and dangerous suggestion, I’m not really sure what the solution is, except to work through the system. If your response to the system is to throw profane tirades during discussions, then don’t be surprised if people question your ability’s as a parent.

    But there have ALWAYS been these kind of emotional fights over custody rights and disagreements over the fitness of parents for behavior that goes on behind closed doors. To say that this particular case is a harbinger of Big Diet taking over our health system, I’m afraid I have to disagree.


    • gingeroid permalink
      March 27, 2014 2:32 pm

      Let me address the personal attack first. It’s not about you. As I stated in the opening, I decided to write about this case because it was the day the family received the ruling. You said agree to disagree so I did. You have never had a problem writing me for clarifications before. With your editorial discretion, you could’ve asked for my intent, declared the post beyond the scope of the blog, etc. A figure skater with a hard to diagnose disease who was separated from her family is someone I relate to. Did you read before deciding to issue a smackdown?

      After a year of treatment for somatoform disorder, her sisters and father are reporting she is experiencing edema, receding gumlines, receding hairline, total loss of sensation below the waist, and as I said, they fear she has sepsis. Because photographs aren’t allowed, it’s part of the family’s frustration. I believe I saw one shot of her with the receding hairline, I’d have to go through my history to link it. She was taken to the ER a few weeks back, but again, the family isn’t being informed.

      I would reiterate that the Connecticut DCF did a home visit and turned up nothing. Nor are the 3 adult Pelletier daughters, including the one with mitochondrial disease, accusing their parents of abuse. It’s easy to judge anger from our spots. Lou has admitted he regrets some of his words. See how calm you are if the state takes custody of your daughter for a year and you fear for her life.

      • March 27, 2014 3:02 pm

        You wrote, “People who warn of government overbearance are often told they’re loony because it hasn’t happened, isn’t happening, and won’t happen.”
        I wrote, “The vague future libertarian threat of mandatory diets is so far removed from what is actually happening that I have a hard time taking it seriously. Badgering doctors? Yeah. That’s what they do. Blocking access to healthcare until you lose 50 pounds? Never going to happen.”

        From what I’ve read, they could establish Justina’s diagnosis with a muscle biopsy. Although I know biopsy’s are painful, it seems like if the parents wanted to establish Justina’s true illness, they would agree to it. But taking your case to Glenn Beck and Fox News and berating everyone involved is not how you dispute the facts of a case like this. And it seems like the Pelletier’s did not cooperate with the legal paths offered for challenging her removal. And you did not answer my question: do you think state’s should disband their protective services for families and children?


        • gingeroid permalink
          March 27, 2014 3:45 pm

          You are not unique in your sentiments. Barack Obama, Lindsey Graham, and Piers Morgan have all expressed similar. It’s not about you.

          I was listening to an archived Jay Severin interview this morning where Lou stated Justina’s diagnosis had been confirmed by muscle biopsy sent to Baylor and Cleveland Clinic. Yes, that is a Blaze personality. Glenn Beck was among the first to take the story national and The Blaze is very good about doing follow-ups. As for right and wrong, we don’t know who he contacted and wouldn’t put him on the air.

          I believe there is a lot of ground between status quo and abolition. I want more rights for the accused. Off the top of my head I would propose: for suspected medical abuse cases there will be a second evaluation by a physician at a different institution before the state takes custody. One person’s opinion with no immediate appeal option is wrong. The family must be informed and may choose to accompany their child to the second facility. They will also be able to have an evaluation performed by the physician of their choosing at any time. The court cannot prohibit the family from adding extra counsel to their legal team. And obviously, no gag orders.

          • March 27, 2014 4:25 pm

            You wrote this the morning immediately following our discussion on this very subject Tuesday. I find it hard to believe this is completely unrelated to my comments.

            As far as making changes to the system, that’s fine. But too often libertarians aren’t interested in reforming the system, they want to remove essentially all government power. But there will still be disagreements and problems with ANY system, even with good faith reforms in place.


            • gingeroid permalink
              March 27, 2014 4:29 pm

              Libertarianism is not anarchism. While there are folks who want all or nothing, I take a page from the progressive book. I’d rather see incremental steps to greater freedom than none at all.

  2. March 27, 2014 2:25 pm

    “In just the last 18 months, Children’s — which given its reputation attracts many of the toughest cases from across the Northeast — has been involved in at least five cases where a disputed medical diagnosis led to parents either losing custody or being threatened with that extreme measure. Similar custody fights have occurred on occasion at other pediatric hospitals around the country.”

    “It happens often enough that the pediatrician who until recently ran the child protection teams at both Children’s and Massachusetts General Hospital said she and others in her field have a name for this aggressive legal-medical maneuver. They call it a ‘parent-ectomy.’”

  3. March 27, 2014 3:12 pm

    Reblogged this on Sly Fawkes and commented:
    Monstrous! People wonder why I avoid doctors unless I have to go. Unfortunately, given the health conditions I have, I have to go three times a year, minimum. The American medical system is a travesty. We have great technology and Draconian ethics.

  4. Elizabeth permalink
    March 28, 2014 10:36 am

    Re: blogger and Shannon’s argument. I totally agree that this case is egregious and I totally agree that this case doesn’t really relate to poor medical care for fat people. If one has ever had dealings with child protective services, one recognizes all the hallmarks of overreach. We tried being foster parents to an extremely disturbed teenage girl; as difficult as she was, she was a piece of cake compared to her social workers and caseworker. I did not want to have to deal with the emotional problems of these adults, and like just about everyone in our society they came loaded with heavy baggage. I took part in revising a workbook for foster parents in which it originally said foster parents needed to be sensitive to foster children’s religious and ethnic backgrounds — sounds good, right? It was revised (against my input) to read that foster parents needed to be sensitive to social workers’ and caseworkers’ religious and ethnic backgrounds!

    At the time we gave up foster parenting (annually, in my state, one-third of foster parents leave the system each year), I had some idea about how to reform the system. One is the end of so-called confidentiality. As an abused girl said to me, “Everyone in my town knew it was me, and who else cared?” Confidentiality only exists to protect the system, not the children. Foster parents and community members need input into the system so that it doesn’t become a closed fortress. And never, ever, should parents/children be punished because they get angry at what is happening to their children/themselves. Calling the doctors Nazis seems quite understandable to me.

    • March 29, 2014 4:23 pm

      I don’t think being an outraged parent is a good reason to insult others by calling them Nazis, personally. It doesn’t make the wronged party sound righteous. It really does just make them sound like an insensitive jackass with little or no self-control.

      • Elizabeth permalink
        March 30, 2014 1:09 pm

        I think highly of your comments, ms xeno, but have you ever experienced your child, whom you care for deeply, being abruptly removed from your care for spurious reasons? Perhaps what people would consider a more appropriate response was the woman in Maine whose daughter was removed — and against policy placed in the home of a woman who worked for DHHS — who tried to do everything right, who was always polite, whose daughter DIED after being killed by the woman whose home she was placed in.

        I personally am able to identify with other people’s pain and can imagine how utterly devastating it would be to have this happen to me and my child.

        • March 30, 2014 9:39 pm

          I have three kids and I cannot fathom how difficult it would be to have the state take custody of them for false reasons. It would be a horrible, living nightmare.

          However, think about the greater number of times that the DHS or DFS have stepped in and saved the life of a child who was really abused. Having to make that call, whether or not to remove a child from custody, is not a frivolous decision, I would imagine. And as with any part of our justice system, mistakes will be made, no doubt about it. There are people who serve time for crimes they didn’t commit and are finally cleared of charges 30 years later. It happens when you ask the State to take steps to prevent crime or child abuse or any other terrible thing that really does happen in this country. But is the answer to abolish DFS or the penal system? No, it’s to reform it and make it better. And there’s PLENTY we can do to both systems to improve outcomes and minimize false arrests and interventions, like some of the things Gingeroid recommended.

          I understand how terrifying it is that DFS can remove custody of your child, but I shudder at the alternative where there is NO agency looking out for the welfare of children.


        • March 31, 2014 1:00 am

          But apparently you can’t identify with people whose families died at the hands of real Nazis, and who are bone weary of the word “Nazi” being simultaneously distorted and trivialized all over the damn place.

          Good to know.

          Real Nazis, BTW, believed that the chronically ill and disabled should be summarily executed. Which is not what either camp in this case is attempting to do. Pelletier’s insult makes him look like an all-star ass. In siding with him on this, guess what you look like, too?

          • gingeroid permalink
            March 31, 2014 8:34 pm

            I have Jewish ancestry. Despite being mixed, I would have met the qualifications for being a Jew and that would’ve bought me a trip to the gas chamber where I’d be in the company of the disabled, gays, Jehovah’s witnesses, Romany, political dissidents, and anyone else determined unfit. However, I have a limited supply of time and energy and I prefer to choose my outrages. I have a bigger problem with the state deciding they’ll gamble a child’s life to prove their opinion than I do with words.

            I believe context matters. I didn’t include the conspiracy theory in my entry because I’m having a hard time substantiating or disproving it one way or the other. According to the hospital’s policy manual, wards of the state can be research subjects. That can mean anything so I’m not reading anything too sinister into it myself. One of the doctors who hijacked the admission wrote a paper on psychosomatic illness (Bujoreanu) and the pediatrician (Newton) did one on Munchausen by proxy. I couldn’t turn one of from the neurologist. The conspiracy theory is that BCH decided to diagnose Justina as somatoform so that she could be a research subject. Children’s did scrub their page on somatoform disorder and I’m not even seeing it on my search result page now. I doubt we’ll ever know the truth where that is concerned, but I think it helps put Pelletier’s accusation into context.

          • March 31, 2014 10:51 pm

            As a wise person on another board once commented, this is the internet. In our interactions with one another, Words are all we have. It’s unlikely I’ll ever meet you or anyone in the article face to face. Unsurprisingly, specific words take on an importance that might be lessened if we were meeting on the physical plane.

            Another way to view the idea of context is: Know your audience. If people indulge in needlessly inflammatory language in the name of context and free speech, they shouldn’t be astonished to find that others, also in the name of context and free speech, might vocally recoil from such language and start wondering if the writer’s poor sense of proportion online might be in effect on the physical plane as well.

    • Trates permalink
      March 30, 2014 12:09 am

      “And never, ever, should parents/children be punished because they get angry at what is happening to their children/themselves. Calling the doctors Nazis seems quite understandable to me.”

      Pretty much. While many parts of our system work like this there have been changes made in other areas that show a shift. Slight but still there.

      Remember the horror stories of cops staging a daring no knock raid on the wrong homes and families (including the pets) being harmed and legally slammed for reacting like someone who just got raided without cause?

      Well some states have amended castle doctrine to include exceptions for those sorts of things. No more getting legally attacked for shooting uniformed invaders if it was the wrong address.

      The medical system will take much longer due to the complexity but so long as people speak up it will get to a better spot.

    • gingeroid permalink
      March 31, 2014 8:09 pm

      Wrong address raids are something else. You’d think there was surveillance performed in order to match the suspect to the address prior to obtaining the warrant to search the home. It doesn’t take that long to double check the address of the home against the address on the warrant.

      There is a crazy amount of abuse in the medical system that requires people to shine light on the subject, people to care enough to look, and people willing to take action.

      • Trates permalink
        March 31, 2014 10:44 pm

        “Wrong address raids are something else.”

        Different situation yes but the sentiment crosses the differences. People are starting to question the power of LEOs and government offices.

        • gingeroid permalink
          March 31, 2014 10:55 pm

          Miscommunication. I was using “something else” colloquially to refer to something indescribable. I believe we are in agreement. The best law enforcement agencies I’ve come across are the ones that are the most transparent to the citizens. With all the bureaucracy, it can be easy to forget that LEOs work for the people, not the institution. And because they are people too, they are not infallible.

    • gingeroid permalink
      March 31, 2014 8:13 pm

      I read an editorial where a good question was asked: What had the Pelletiers done prior to February 10, 2013 that was abusive?

      The confidentiality thing is a joke. I remember this being disputed in suicide prevention training we had to sit through. It’s small comfort to the person who was outed that the practitioner who breaches could lose their license. I do give the agency credit for being honest in their manual, as terrible as their philosophy is.

  5. Elizabeth permalink
    March 31, 2014 11:21 am

    I won’t even dignify ms xeno’s reply, but Shannon, I do not want a world without child protective services. However, however, however. My foster daughter was first seen at age three with a distended belly from malnutrition; the neighbors had called the state due to the violence within the home. Was she removed? NO. She was returned to her polysubstance-abusing mother the next day where she remained for many years until it was discovered she had a broken arm that had not been treated.

    In terrible situations, it is important to remove children, but there are a significant number of children removed who would be better off with their parents. I did respite for one girl who should have been with her mother despite her mother’s occasional poor decision-making. The girl in Maine who was murdered by her DHHS employee/foster mother should never have been removed. When studies have been done, children who have been removed have much worse outcomes than children in similar situations who were left with their parents.

    These are difficult questions for which there are no easy answers, but if you have ever had DIRECT contact with CPS, you will understand my misgivings about overreach. The problem always seems to be that when you give people a little power they will generally misuse it.

    • gingeroid permalink
      March 31, 2014 8:40 pm

      if you have ever had DIRECT contact with CPS, you will understand my misgivings about overreach
      I know exactly what you mean. I had said something that triggered a visit from CPS. My parents are not and were not abusive. However, I couldn’t warn my family that it was coming and that was hugely upsetting all around. Later on I’d referenced the visit during a counseling session, which triggered another visit. I was able to warn them it was coming that time but it was even more uncalled for than the first one. Nothing came of either visit aside from grief to my family. The more I research, the more I realize how lucky we were that it wasn’t worse. There’s so much tunnel vision around protecting children that protections for the accused are an afterthought.

      • Elizabeth permalink
        April 1, 2014 2:16 pm

        This is interesting that things you said triggered visits, when people call repeatedly about children in life-threatening and abusive situations and never see a response. Why do I believe my foster daughter was not removed and children were removed whose mothers were trying their best? BECAUSE CPS WAS SCARED OF MY FOSTER DAUGHTER’S MOTHER WHO HAD A HISTORY OF VIOLENCE.

        You are lucky things didn’t turn out worse. It may have helped if your parents appeared middle-class.

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