"Suffering the Slings and Arrows of Outrageous Fortune"

The Role of Boston Children’s Hospital in the kidnapping of chronically ill kids

In this ongoing series about Justina’s case and its implications for us all, I have been discussing the very reasonable question of ‘why would anybody, much less Boston Children’s Hospital, want to kidnap Justina Pelletier?’ Part 1 covered the ugly role of Psychiatry in the this case and others like it. But, as guilty as the psychiatrists are, they need a home base to practice in and they need resources to accomplish what they have done to Justina. In this case, that home base is Boston Children’s Hospital.

Before I go any further, I will point out that I am well aware that Boston Children’s Hospital is considered one of the best hospitals in the country. It is renowned for providing top notch medical care to children; families from across the country and around the world bring their children to BCH for care that is desperately needed. I get this. I really do. I have a chronically ill child who needs the specialized care she can only get at Cincinnati Children’s Hospital; I can imagine how I would feel if this scandal was happening there and people were suggesting the hospital should be shut down. So, no, I am not one who believes the ‘whole place’ needs to be shut down. That is not realistic or necessary.

However, the very obvious good that BCH has done is being overshadowed by the very ugly bad going on under its roof and the bad cannot be ignored. While I am of the opinion that the players in the Justina’s case are likely (hopefully) not representative of the entire staff, the reality is that what is going on is not just unprofessional, unethical, and morally reprehensible, but possibly criminal.

Furthermore, the evidence is pointing to this behavior going on unchecked for years. Justina is not the first child this has been done to – if she were, it could  passed off as just a misunderstanding or a mistake or something…but she isn’t the only one and Boston Children’s needs to explain its actions and come clean.

While each person involved in this sad spectacle is responsible for their own conduct,  at some point, the administration of Boston Children’s Hospital is ultimately culpable for what happens on its watch. I would argue that point has long since past, but, at minimum, there needs to be an investigation and some serious housecleaning. With the law suits that are undoubtedly coming, we can hope this happens. As one of the preeminent  hospitals in the country, lying about and covering up wrong doing is beneath them and they owe their patients a sincere accounting of wrong doing.

The Line Up

When Justina ended up at Boston Children’s Hospital in February of 2013, the sole purpose was to see her GI motility specialist who had moved there the month before. Instead, she saw a young neurologist, just 7 months out of med school. She would not see Dr. Flores, the GI, until more than a year later. Dr. Flores was a staff physician at BCH – why was he not allowed to see Justina when she was sent there specifically to see him?

https://www.facebook.com/photo.php?fbid=10152280754717022&set=o.223981364392888&type=3&theater

Some of the people involved in Justina’s case

Jurriaan Peters, the neurologist, told the family he didn’t believe in mitochondrial disease. If he is correct and mito is a myth, why then has the Mayo Clinic established a Mitochondrial Disease Biobank?  The Cleveland Clinic seems to ‘believe’ in Mito. Is he saying the NIH is wrong? Heck, Boston Children’s Hospital actually has a Mitochondrial Disease Program, where doctors treat this mythological condition.  Since when does a mere resident have the right to simply ignore a recognized medical condition and overturn a prior diagnosis? Perhaps the better question is ‘why would he want to?’

The family initially went along with Dr. Peters when he said a new approach was needed, not knowing that Justina’s mito diagnosis was about to be replaced with Somatoform Disorder. The new diagnosis was made by Simona Bujoreanu, a psychologist called in by Peters when he became ‘suspicious’ of Justina’s symptoms.  When the family objected to these doctors, who had only seen Justina for a few days, ceasing her medications without even consulting with her doctors from Tufts and overturning the established mito diagnosis, the child protection team was notified.

Dr. Alice Newton, director of the Child Protection team, made the decision to call in the Department of Children and Families after a review of Justina’s records. It is notable that she never met Justina and never spoke to the family before making that life changing decision. She did speak to Dr. Korson, the Tufts mito doc who diagnosed Justina, but apparently the conversation was simply a notification of what was happening, not a discussion of Justina’s condition.

Before she left Children’s to go to Mass General in the middle of Justina’s time at BCH, Dr. Newton made the point that kids who are being medically abused often ‘blossom in front of your eyes’ once removed from their parents’ care. Unfortunately, Justina did not blossom and instead, got worse – at that point, they were quick to say that it can take years for kids who have been medically abused to come around. Dr. David Demaso, BCH psychiatrist- in chief, when asked why the Pelletiers had to accept the somatoform diagnosis as a condition of regaining custody, ducked responsibility by shifting responsibility to DCF – as if BCH had no part in it.

Justina was transferred to BCH’s infamous Bader 5 psych unit – a unit that is for children who are a danger to themselves or others. It is a stretch to put Justina in this category but she spent months on the unit, although it is designed for short stays of a few weeks. Eventually, the court sent her to a Psychiatric residential facility – again, designed for short stays – where she has been for a couple months and remains as of the publishing of this post. Her medical care has been ordered transferred to Tufts, although that has not happened. Another hearing is coming up on Monday, to determine the fate of this child who has been stuck in the hell created by Boston Children’s Hospital for more than 13 months.

The Motivation

Nobody quite knows what the motivation for sweeping in and taking custody of a child on the basis of a disagreement between doctors. Honestly, it really doesn’t make much sense from the outside, but clearly there is some motivation at work here because it has happened enough times to become a clear pattern; we can reasonably speculate on what that may be.

Certainly, we cannot eliminate the impact of arrogance and ego as a possible reason for these people circling the wagons. But ego just doesn’t explain it all…this goes beyond the typical territorial behavior of specialists. Accusations of targeting well-off families with good insurance and poor families who have no resources have been leveled. Educated, involved mothers seem to be particularly at risk. Certainly kids with rare conditions like Mito and PANDAS are at risk.

There is an interesting clue in this BCH document regarding research and wards of the state that may get us closer to understanding a motivation…

“Children who are Wards of the state may be included in research that presents minimal risk…or greater than minimal risk with a prospect of direct benefit.”

That statement, pulled directly from the document from BCH, should cause anyone reading to pause and consider its implications. Is the ability to research on children without their parents’ permission the motivation? Could they really be picking kids who fit a needed profile and separating them from their parents’ custody? I think it is entirely possible this is the case. There is grant money to be had for research – a powerful carrot in the academic world of ‘publish or perish’.

In my previous post, I pointed out the evidence that psychiatry is in bed with the pharmaceutical companies, with all making BIG bucks. Is it possible that these doctors have a vested interest in making Somatoform Disorder (Somatization or Somatic Symptom Disorder or Conversion Disorder or whatever they call it today) a standard of care and ‘experimented’ on Justina to prove their point? Were there anti-depressants or anti-psychotics involved? What connections do the involved doctors have with pharmaceutical companies? Is this a matter of ‘better to ask forgiveness later (or not even bother apologizing when they eventually hand over a damaged or even dead child in the end) than to ask permission now’? This is why an outside investigation must happen – so we can have these answers.

The Power

Boston Children’s Hospital has an enormous amount of power as an arm of Harvard University. With their reputation as a top notch hospital, their word is gold. They alone decide when to bring in DCF and, when they do, DCF goes right along with whatever BCH says because they have no way to dispute a medical diagnosis and possibly no desire. DCF certainly is not an agency seeking independent truth – they accept whatever BCH says. The courts then go along with BCH and DCF and parents have no recourse against the powerful machine that is Boston Children’s.

Jessica Hilliard, whose young daughter died of mito and younger son was subsequently diagnosed with it, barely escaped the clutches of BCH, said ‘My main concern is the child protection team at Boston Children’s Hospital, they don’t see any boundaries. They don’t see anything wrong with going after families that aren’t at the hospital anymore…The fact that Children’s has so much power that they can get us in trouble with a totally different hospital across the city is appalling.”

The whole process goes back to the child protection team at Boston Children’s. This is now a board certified specialty that wields enormous power that is ripe for abuse – criticism is coming even from their own. Dr. Eli Newberger is a pediatrician who founded the child protection team at Boston Children’s in 1970 and ran it for three decades. He warns that “doctors in this new specialty have enormous and really unchecked power.” Newberger points out there is a  tendency for child protection teams to ‘show a reflexive willingness to label and to punish’. Mothers who are educated and perceived as pushy are typically the victims of this attitude. The common thread in the handful of recent cases similar to Justina’s – 5 in the last couple years – was the parents being ‘difficult’ and objecting to the diagnosis of a psychiatric condition rather than a physical one. Disagreeing with a doctor resulted in a parent-ectomy, as it is called at BCH.

An internal ethics committee report a few months into this case, while never directly pointing out wrongdoing, spoke of Justina’s opinion and needs. It recommended obtaining an outside medical evaluation and increasing parental visitation rights. This report was ignored.

Denial of Rights

While the possibility that physicians at Boston Children’s are doing medical research on Justina or any of the children they have taken from their parents is profoundly concerning, we know that Justina has been denied basic rights for the entire time she has been out of her parents’ custody. The people at BCH and DCF are representing themselves and no one is speaking for Justina – her parents have been gagged for most of the time and Justina’s voice is being ignored. The family reports that Justina was treated differently than every other patient on Bader 5.

She was not permitted to see a priest when she and her family requested it. She has not been able to celebrate the religious holidays that are important to her Catholic faith. This is pretty awful if true and one has to wonder why this would be. Why would they prevent a child from something as simple as seeing her priest? (Perhaps because he would be inclined to speak out about the conditions Justina was being subjected to?)

The family says that before being admitted to BCH, Justina had a Individualized Education Plan at her private school and was doing well. Allegedly, Justina has received no education while at BCH and in the custody of DCF, now missing out on two school years. IEPs are protected by law – if this was not followed, this is a serious matter and the Pelletier legal team are taking it seriously.

Justina was allowed 1 hour of supervised visitation per week with her parents. Her sisters have had limited contact with her and her grandparents have not seen her at all. Other children on Bader 5 were permitted to visit with family and even go home for holidays. But not Justina.

Her outgoing mail is read and censored: she is punished for hiding messages to her family. Her incoming mail is read, presumably censored and gifts withheld.

Justina has been taken off her medications and received little medical treatment during her stay with Boston Children’s. She is in constant pain but receives no pain medication. Her condition has deteriorated to the point where she needs a wheelchair and is essentially paralyzed below the waist. At a recent visit, her mother caught a glimpse of Justina’s stomach, which was streaked with red lines around her port – a sure sign of infection. The DCF workers laughed when this was pointed out.

Click to see a full size image

Justina recently told her parents that she feels like she is in prison. The sad truth is prisoners have more rights than Justina does. Prisoners get medical treatment – it would be considered cruel and unusual punishment if they didn’t. They get education if they are under age and the opportunity to better themselves as adults. They get  regular visits from clergy. Their mail is somewhat private. They have more visitation time than Justina – a prisoner incarcerated in Massachusetts would be entitled to 5 hours of visitation a week. Shocking, isn’t it?

Whatever else is discovered, we know Justina has been denied some of the most basic human rights. Diane O’Leary, executive director of the Coalition for Diagnostic Rights, says about the BCH doctors involved “Clearly they believe — or they did believe — that it was in her best interest to take away all medications and try to train her to control symptoms. But they are guilty of absurd faith in their own indefensible hunches. They’re guilty of not noticing that these diagnoses don’t have medical support. They’re guilty of violating of her rights. ” Even if she has Somatoform Disorder, she has still has rights.

The Coalition for Diagnostic Rights has written a letter to the Judge Johnston, detailing the violations of Justina’s rights as a patient. Many excellent points are made and all should be answered by Boston Children’s Hospital. The best point perhaps is # 2, which sums up the entire situation of the decision to remove Justina from Lou and Linda’s custody:

“The Court challenges the safety of the parents’ decisions on the basis of their disagreement with doctors at BCH, but also on the basis of failing to disagree with doctors at Tufts. That is a contradictory standard no parent could meet.”

A child arrived at Boston Children’s with a diagnosis of Mitochondrial Disease. That diagnosis was brusquely overturned in favor of ‘it’s all in your head’. Justina’s family objected and tried to take their daughter back to her doctor: Boston Children’s refused to allow them to seek a second opinion and brought in DCF, who removed Justina from her family. The family is being punished for believing their own doctor of many years and not accepting the new diagnosis given to Justina. There is clearly something not right here.

Boston Children’s has much to explain about their role in this situation. They are at the heart of the whole matter and their ruthless behavior towards parents who have the audacity to disagree with them is stunning. If they are profiling children from certain families in order to do research or profit in any way, there should be swift and extensive punishment.

As I see it, BCH is the problem – they simply use DCF to do their dirty work. They make an awful lot of money from kids like Justina and I don’t think they care who pays the bill or what the cost is to the children involved.

My next post will discuss the Department of Children and families, which is a corrupt entity all by itself. However, without the corruption of Boston Children’s Hospital, DCF would never come into the lives of people like Justina.

A good article about patients rights in the case

 

Go to Part 3

Advertisements

Comments on: "The Missing Pieces of the Puzzle Part 2 #FreeJustina" (11)

  1. The thing I found the MOST nonsensical and bizarre about this nonsensical and bizarre case is that even when parents are clearly (in my eyes) doing things that are against their child’s best interests – like rejecting standard medical care for treatable childhood cancers and trying unproven alternative treatments, kids are very very rarely actually removed from their parents care.

    • You are absolutely correct! This clearly isn’t a case where they want to reunite the family or they would have done so already. This clearly isn’t a case of medical child abuse – disagreeing with a doctor is not abuse and all of the procedures done were ordered by a doctor and approved by insurance. This clearly isn’t a case of battling egos or they would have worked it out by now. And it isn’t a mistake because it has happened too often. So, the only other option in my mind is it is on purpose for some reason and it is logical to assume that reason is profit.

      DCF is corrupt through and through – if they wanted to reunite the family they could have long ago. It seems they give kids back to horrible parents (in the same city they allowed a woman who hired a hit man to kill her husband to keep custody of their daughter but keep Justina from her family) but remove kids from good families. And this same DCF has simply lost 134 kids in their custody. Proof, gone. A 5 year old has recently gone missing from their custody and is presumed dead. And they think they are more qualified to care for Justina than her family.

      Appalling. And it is not just here -there are horrifying stories from around the world. Scary.

  2. Tiffany said:

    Hi Beth…I just want to thank you for such a clear, thorough, well considered communication of the whole situation surrounding Justina Pelletier. I also thank you for being the one who alerted me to it. As a mom with one diagnosed EDS daughter and a son I’m sure has it but hasn’t yet needed to be diagnosed, this hits so close to home. The more people like you, who have a venue (and the talent!) to communicate in such an effective way, put the word out, the better chance all of us have to turn back this very scary tide.

    I’m assuming you know that Lou Pelletier, two of Justina’s sisters, and Rev. Mahoney have taped a Dr. Phil show this week that airs Monday March 17? I don’t recall you mentioning it in the blog…might be good to put the word out!

    • Thanks so much for commenting and especially reading! I know these posts are very long, but the case has to be made – not just to caution people like us, but for the doubters who try to say that doctors and DCF would NEVER wrongly take a child. The answers are there for anyone willing to look.

      There is not much I can do for Justina from here – too far away to attend the prayer vigils and rallies. I can pray but I can also write and use my platform, small as it may be! Chronic illness is a lonely path, but it is times like these that we realize that we are not alone! We will not be silent until Justina is home and a law is passed to protect our kids!

      And, yes, I know, about the Dr. Phil show – was going to post about it tomorrow – but thanks for bringing it up! I am glad you already know about it and thought to mention it. The more publicity Justina gets the better!

      Thanks again for commenting!

  3. Beth: You’ve hit the proverbial nail on the head. What you’ve stated thus far (and I’ve not even read Parts 1 and 3 yet), is what I’ve been feeling in my gut ever since this story first broke headlines. I have never seen anything like this. I worked in the legal field for over 20 years; I worked in family law briefly, but never in those few years have I ever witnessed this sort of abject, appalling, ruthless behavior on the part of ANY healthcare entity! My opinion? Justina was a MARK. She was (literally) bought and paid for. She is an INVESTMENT, purchased by BCH for their research. I know that sounds all conspiracy theory ‘like’, but that’s what my gut instinct tells me. The Pelletier case goes far, far beyond the boundaries and vagaries of ego. No, this is much more than about egos. It is about the absolute ruthlessness of certain individuals, possibly with ties to Big Pharma, and they will stop at nothing for whatever gain there is to be had, with this young girl and perhaps many, many others, at their hands. Perhaps a bit of motive in not returning Justina more quickly back to her family will be the release (via legal means) of her medical records, when all is said and done. I can’t keep the vision of Justina out of my head when I see one particular picture of her repeatedly, when she’s sitting in her wheelchair, looking toward Linda as Linda is walking toward her with balloons in tow. Justina looks completely drugged out of her mind. There IS pure evil in this world and if anything good comes out of this damned mess, it’s the realization that this sort of thing is not only happening to this lovely family, but it has happened to many others.

    • Thanks so much for reading and commenting. I agree totally with your comment. Since we have experience with our local children’s hospital, I can tell you that there are protocols EVERYWHERE. People don’t realize that and usually it is harmless but not always. I know we had a horrible experience with a neurologist at the headache clinic here – she immediately (before even laying eyes on my daughter) decided it was migraines. Wouldn’t listen to a thing we said, was really nasty and hateful when I disagreed with her and wanted to shunt my daughter right into their migraine protocol. We walked out the door (ran is more like it) and never darkened their door again. I understood very quickly that that protocol only included the spin of who was helped and people like us, who rejected it or were non-compliant, were not included in the numbers. It wasn’t migraines and my daughter eventually got the right treatment that changed her life, but I shudder to think what would have happened if we listened to that woman – I have a hard time calling her ‘doctor’.

      In Justina’s case it is a matter of life and death and I totally agree that she was shunted into some sort of protocol. I agree that she looks drugged – and not just in that one picture/video. No way are they not giving her anti-psychotics/ anti-depressants. There is so much money changing hands in every direction that it is sickening. Honestly, I have started viewing it as a form of human trafficking. And it is horrifying. It is an industry and it has to be stopped. God bless Lou Pelletier – they messed with the wrong dad this time and hopefully the time is right to make some big changes in the whole system. I have heard the term ‘commodities’ used in reference to the kids who fall into the foster care system. THAT is heinous!

      Thanks so much for your comments!

  4. And with my last statement in the above comment, I would add that because the Pelletier case has now come to the attention of many world-wide, perhaps this sort of thing (which is happening all over the globe), will get the much needed sunshine it needs and reforms will take place. Wishful thinking, I realize, but one can always hope.

    • That is my hope and prayer as well – and I believe the Pelletiers are committed to doing whatever they can to make those changes!

  5. […] as pointed out recently by the author of the blog Suffering the Slings and Arrows of Outrageous Fortune BCH’s own Clinical Investigation Policy Manual […]

  6. Worc1 said:

    Great article. Very insightful and truly horrifying. It would seem that the Child Psych Dept at BCH is searching for lab rats to test powerful drugs on. I wonder if Dr. Joseph Biederman of Harvard University has something to do with this.

    • Hey there,
      Sorry it took me so long to approve your comment and reply – been on vacation for a few days and just found this.

      First, thanks for the kind words. In answer to your ponderings, I would say that Biederman may not be directly involved in Justina’s case, but this is just a continuation of that same school of thought. I don’t want to make accusations and get myself in trouble, but will point out that DeMaso has listed Beiderman as someone he admires and is ‘like’ in a bio – don’t have the link handy and it may have been scrubbed since I last saw it – but it seems evident that there is a connection of some sort. And it is despicable.

      Thanks for commenting!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: