Introduction: To Whom It May Concern



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Introduction:

To Whom It May Concern,

My name is Martin Gottesfeld. I am an American human rights activist writing to report that numerous children and their families have been tortured as well as additionally subjected to other Cruel, Inhuman or Degrading Treatment or Punishment (herein referred to as ITCIDT") by Boston Children's Hospital (herein referred to as "BCH") with the assistance, or at least the acquiescence, of State officials, such as juvenile court judges and The Massachusetts Department of Children & Families (herein referred to as "MA DCF.")

To establish that torture and its counterparts occurred, it is important to focus solely on the readily available facts, while ignoring any bias based on the reputations of the accused parties. As you are representatives of a neutral organization bound only to the evidence, I am sure that this is well within your capabilities and professional norms. I ask only that you follow your consciences and the data, wherever they may lead.

I would also like to take this opportunity to highlight that some of the worst, most despicable, child abuse has been found to have been perpetrated and covered up by those in positions of trust at some of the most esteemed and beloved institutions, including BCH. An incomplete list of examples includes the following expanded citations:

[1: "Pediatrician In Abuse Case Killed Himself" - The New York Times - 2011-02-26]

[2: "Judge Tosses Lawsuit Against Children's Hospital: Not Responsible For Ex-Employee" - The Boston Globe - 2012-07-17]

[3: "Boston Children's Hospital Doctor Barred For 'Spiritual Diagnosis'" - The Boston Globe - 2013-05-10]

[4: "Pediatrician Sentenced For Child Pornography Charges" - The U.S. Department of Justice - 2014-03-12]

So, please do not allow external appearances to prevent you from looking deeply into these matters.

Thank you for your due diligence,

Martin S. Gottesfeld



Background:

The United Nations Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (herein referred to as "The CAT") was signed by The United States on April 18th, 1988 and ratified on October 21st, 1994. It has been The Law of the Land in The United States since shortly thereafter.[5: Article 27 § 2] The United States is bound by it, as it is by any other treaty it entered into in good faith.[6]

Although the torture and other CIDT reported here are known to have occurred across multiple cases involving multiple patients and their families,[7,8,9] some of whom have come forward, but an unknown number of whom have been kept silent by court issued gag orders,[10, 11,12] the best documented instance is that of Justina Pelletier, a mitochondrial disease patient. On February 10th, 2013, then 14-yearold Justina and her mother, Linda, arrived at the BCH emergency department with a referral to see a specific specialist. Justina had the flu, which was causing serious complications, as it is known to often do for mitochondrial disease patients.[13,14,7,15,16]

However, instead of seeing the physician they expected, a different team of fairly junior clinicians came up with a competing somatoform disorder diagnosis. Somatoform is a psychological condition where a patient experiences psychosomatic physical symptoms.[17] Looking to prove their new hypothesis and believing many of Justina's medications, prescribed for mitochondrial disease, to be unnecessary, the BCH team, at first, sought consent from Justina's parents to stop those therapies. The new BCH treatment plan also sought to prohibit the Pelletiers from seeking second opinions, especially from doctors outside of Boston Children's Hospital.[14,16,17,18]

Fearing for her life, her parents refused to consent to this radical departure from Justina's existing treatment plan. They attempted to discharge her and bring her to leading mitochondrial disease expert, and then Chief of Metabolism at nearby Tufts Medical Center, Dr. Mark Korson, who had been successfully treating her since 2011.[19,17,15] Dr. Korson had referred the Pelletiers to BCH to see Justina's gastroenterologist, who had recently moved his practice there. No one expected a fairly junior team of doctors at BCH to take it upon themselves to re-diagnose Justina without being asked.[14,16,18]

That should have been the end of the story. Justina's mother and father, as her legal guardians, should have been allowed to choose her doctor(s) and treatment plan.[20,21,22] If it had ended then and there you wouldn't be reading this now, but, tragically, it didn't end there. Boston Children's Hospital wouldn't take "no" for an answer and filed a report with MA DCF, citing concerns of so-called "medical child abuse." [14,16]

Similar to the now outmoded diagnosis of Munchausen Disorder By Proxy, medical child abuse refers to a situation where parents subject a child to unnecessary, invasive, medical procedures, causing them harm.[23] Combined with the somatoform disorder diagnosis, the BCH hypothesis was that Justina had physical symptoms which were the result of a psychological condition(s.) BCH felt that by following the course of treatment for mitochondrial disease recommended by Dr. Korson's team at nearby Tufts Medical Center and not treating Justina psychiatrically for somatoform disorder, her parents were abusing her. At the behest of the new, fairly junior, BCH team, MA DCF took emergency custody of Justina, and provided BCH the consent to implement its treatment plan.[14,16]

At a court hearing the next day, MA DCF presented misleading statements from BCH doctors regarding Justina s mitochondrial disease diagnosis. Not surprisingly, Massachusetts juvenile court judge Joseph Johnston went along with BCH and MA DCF, see [16: "Frustration On All Fronts Over Child's Future" - The Boston Globe - 2013-12-16], emphasis added:

The affidavit showed considerable deference to [Boston] Children's [Hospital]. It quoted liberally from hospital records and interviews with staff members there, including accusations that Justina's parents were obstructing her care. It said the [Boston] Children's Hospital] doctors "do not know where the parents picked up the current diagnosis and they are hard to disprove." It included negative comments from Justina's Connecticut pediatrician about how [Justina's parents] Linda and Lou had "fired" multiple doctors and "encouraged" the diagnosis of multiple medical problems.

However, the affidavit failed to mention that the social worker had interviewed [Dr.] Korson, and that [Dr.] Korson had explained the origins of the working diagnosis of mitochondrial disease that he had given Justina. Internal state records show that [Dr.] Korson had explained that the disorder sometimes runs in families and that he had also been treating Justina's older sister for it.

When the judge decided to maintain temporary custody of Justina with the state, the Pelletiers were furious. They took their complaints to every authority they could think of: the district attorney, the attorney general, the governor's office, even the FBI. They alleged that [Boston] Children's [Hospital] was using its considerable muscle to box them out at every turn. When the parents received an e-mail from the person the judge had appointed as an independent investigator to advise him on the case, they were outraged to see her list an affiliation with [Boston] Children's [Hospital] in the e-mail.

As you can see, the BCH doctors claimed not to know where Justina's mitochondrial disease diagnosis came from, but in [14: “A Medical Collision With a Child In the Middle" - The Boston Globe - 2013-12-15] it is stated that while Justina's mother, Linda, was talking with Justina's new BCH neurology resident, Dr. Peters:

Linda explained that [Dr.] Korson, the chief of metabolism at Tufts, had diagnosed Justina with mitochondrial disease, the same disorder that another of her four daughters, 24-year-old Jessica, had been diagnosed with several years earlier.

Additionally, according to The Boston Globe, the BCH doctor who led the team that would actually file the medical child abuse report, Dr. Alice Newton, reached out to Dr. Korson, see [14]:

[Dr.] Korson counseled caution. By its very nature, he stressed to Newton, mitochondrial disease can be a "setup" for accusations.

It's noteworthy that apparently both BCH and MA DCF left out their discussions with Dr. Korson from their written work. The odds of both simply making an unintentional error of omission seem low.

In any case, I would like to report that Justina's parents pointed out these discrepancies to the court, had the relevant medical records admitted into evidence, and that the allegations against them were quickly dismissed, leaving them free to return Justina's care to Dr. Korson's very capable leadership.[24,17] However, I can't. Instead, I must report that various medications were stopped, including Metoprolol, the absence of which left Justina tachycardic, as well as Lyrica, leaving Justina in agony around the clock.[25,26,27,28,29,30]

On or about February 10th, 2014, a full year after Justina had first arrived at BCH, ABC News interviewed Dr. Richard Boles, a practicing physician and the medical director of Courtagen Life Sciences, a genetic testing company, see [29: "Advocates Fight For Justina Pelletier, Teen Held By State In Psych Ward" - ABC News - 2014-02-101:

"People with mitochondrial disease have a lot of pain," [Boles] said. "Normal sensations are amplified by the nervous system. They are not making it up. The idea of somatoform is you are making it up to serve some need. But they are having real pain."

This sad state of affairs would have been bad enough for one day, but as Lou Pelletier, Justina's father, told television host Emily Rooney, see [25: "Justina Pelletier's Parents Fighting To Get Her Back" - Greater Boston - Approx. 2014-03-06], emphasis added:

She went from a healthy as could be young lady, to a person now in a wheelchair, pretty much paralyzed below the hips, almost no physical strength above the hips. She has been totally medically abused. She had tachycardia, medically diagnosed, was on Metoprolol for that. Since she's been at Boston Children's [Hospital] through [MA] DCF custody, she's been off that. So, she's had a heart rate of anywhere from 100 to 152, medically verified. Number two, she had a cecostomy tube placed into her colon so she can go to the bathroom, for neuropathy of the colon, and when you're a mitochondrial [disease] patient, you're more sensitive to your nerves, kind of like somebody with fibromyalgia. So, she was taking Lyrica to deaden the nerve pain. So, she's been in severe pain, non-stop, twenty-four hours a day for thirteen months.

In addition to the above physical suffering, Justina and her family were made to endure significant psychological and emotional trauma.[31 11 112,7,30,18,32,33,34] Justina was forcibly committed to Boston Children's Hospital's now infamous Bader 5 in-patient psychiatric ward on or about April 9th, 2013. The record shows that she did not go willingly, as The Boston Globe printed, see [14], emphasis added:

In April, doctors told Justina that she was being transferred to Bader 5 -- the hospital's psychiatric ward that focuses on the treatment of seriously troubled children who may pose a risk of harm to themselves or others.

Her new home would be a private room in the 16-bed, fifth-floor unit at the northern end of the hospital. On Bader 5, the entry doors are locked at all times and sharp objects are prohibited. The days are regimented, with set times for wake-up and lights-out as well as tutoring sessions and communal meals.

Justina, the mild-mannered teen known for her sweet smiles, furiously resisted the move.

"She was visibly upset, stating she refused to go," a clinician in the psychiatry unit wrote in the hospital record on April 9. "She stated she wanted to speak to her lawyer."

Justina, who was desperate to return to school even if she was unable to walk, repeatedly told the [Boston] Children's [Hospital] team that she did not want to go into this ward. But, the record noted, she was informed that "she was not able to make this choice."

The next day, the same publication repeated much of this same surprising information in summary, see [16], emphasis added:

In short order, a team of different [Boston] Children's [Hospital] doctors had disputed [Dr.] Korson's working diagnosis of mitochondrial disease for Justina and accused her parents of medical child abuse. This paved the way for the state child protection agency to intervene and strip the parents of custody on an emergency basis. From there, Justina, against her strong objections, was moved into the hospital's locked psychiatric ward. [Boston] Children's [Hospital] and the state had ignored [Dr.] Korson's requests to be
included in a roundtable meeting to discuss Justina's care.

As The Boston Globe stated on multiple occasions, Bader 5 "specializes" in treating children with serious mental illnesses which make them a threat to themselves or others. As quoted above, it is a highly regimented, restrictive, environment. The reason provided for Justina's placement there against her will was her difficulty attending to her daily needs.[14,16,31 ¶ 82]

In addition, ostensibly to protect Justina from psychosomatic effects, she and her family were forbidden from discussing her condition and treatment.[17,31 66(3:iii)] Her parents were also
forbidden from taking-photographs of Justina.[33] Desperate for help, Justina took to smuggling notes to her family hidden in art projects, and despite the prohibitions, her loved ones were able to take and publish some pictures of her, visually depicting her marked, terrifying, deterioration. Her hair started to fall out,[28] her legs swelled,[15] and her gums receded.[35,36,37,27,38]

Behavior modification was started on Justina, with the goal of demonstrating to her, and to the world, that her physical symptoms had psychological origins. This entailed staff effectively ignoring her complaints of pain and pleas for help. Boston Children's Hospital doctors and other employees repeatedly insisted that Justina do, what was for her, physically and medically impossible, especially without her key mitochondrial disease therapies; things like walking, changing clothes, and pushing her own wheelchair.[39,40] In one of her hidden messages, Justina mentioned that staff would actually grab and move her limbs when she was unable to.[36,35] This was probably what she was referring to in later interviews when she said staff "actually" made her do things.

After she was finally released, an incredible sixteen months after BCH first made its accusations against her family, Justina also reported that as a result of hospital employees refusing to help her, she was effectively secluded, see [39: "FoxCT Exclusive Interview With Justina Pelletier" - The Hartford Courant - 2014-06-18], emphasis added:

[They were] just pushing me and push[ing] me. It wasn't just the walking. They made me use my whole body, and I couldn't do all that.

They would put me in a room where they would do all this other mean stuff. They’d say "You have to do it," or -- and then they'd start laughing and then they would leave me and then they'll make me be there for sometimes up to two hours or more.

They would make me, let's say, the shirt, they wanted me to get my shirt off on my own. So, then they'd make me do it by myself even though I can't. So, then they say "You can do it. You can do it." I don't know how to explain [it], but they were just very hard on me and they wouldn't help me at all, not even a little bit. They would just touch me and say "Wake up your bones." It was very, very, tough, and I just don't want it to happen to anyone else...

They didn't believe me. They didn't help me at all. They would leave me in the hallway, one time for a whole weekend. I was just sitting in the hallway, staring at it because they wouldn't help me... They wouldn't let me talk to any other kids there. I was basically just staring at the wall all day or them yelling at me, saying "Do this, do that," and I couldn't do all that. And they wouldn't give me a break. Even though, when I got really sick with pneumonia, they would still treat me the same, treat me worse than that even. So, yeah, I just don't want it to happen to anyone else...

Yeah, I said it was torture, but that they didn't believe me that it was torture. They said "You can do it. It's not torture. You can do it.

I said "I can't."

"Yes, you can. Don't say that."

All this other stuff, I can't... I don't know... Say, they just left me and they'll made me do it, and then they'll say, they would actually make me do it. "You can do it. You can do it," the whole time. All this other stuff for me, the whole time, and then sometimes they'll leave and they'll just leave me there and say that maybe if they leave, I can do it when they leave, and I can't.

Heartwarmingly, the Pelletier family would later report in their civil filing, [31: "Justina Pelletier PPA Louis and Linda Pelletier v. Jurriaan M. Peters, M.D. et al." - Massachusetts Suffolk Superior Court, Civil Action No.: 2016-0474D - 2016-02-16]:

88. While on Bader 5, Justina would often be left alone in her wheelchair for hours at a time if she would not, or could not, wheel herself to common areas. From time-to-time other patients would attempt to move Justina to a common area.

However, the above paragraph concludes:[31 88]

Often, the patient would be scolded and told that she [Justina] "has to do it herself."

The hospital and State failed to accommodate Justina's needs as a child with disabilities. Justina and her parents further reported that she was sleep deprived. Mitochondrial disease patients require more rest, and this necessity was intentionally disregarded in Justina's case. She was woken early in the morning and not allowed to nap during the day.[14,35,41]

Further, citing accusations against Justina's parents, BCH and MA DCF reduced the family's visitation time to one hour once per week. They were denied visits on holidays and family birthdays as well as the ability to attend church services.[31 ¶ 87,42,18,34,43,44,45,46] BCH and MA DCF also insisted that her parents accept the somatoform disorder diagnosis, see [16], emphasis added:

The state workers began with a bombshell. They informed the Pelletiers that they would no longer be allowed to have daily visits with Justina. Henceforth, they would be granted just a single hour-long visit each week, on Friday afternoons. The agency cited disruptive behavior on the part of the family, records show. During one visit with Justina, Linda had held needles in her lap. When confronted by staff who insisted she put them away, she complied and explained they were for her diabetes. Linda described the needle incident to the [Boston] Globe as an innocent mistake.

Staff also accused her of trying to stir up trouble. Agency records say that Linda "had gone up to other parents on the unit and reportedly told them that [MA] DCF was going to take away their kids."

With that confrontational tone set, the meeting soon erupted into a screaming match. Before long, agency manager Suzanne Hauck instructed security to remove the Pelletiers from the meeting. Once outside, the parents called Boston police to complain.

Then the Pelletiers called [Dr.] Korson. Later that day, in an e-mail exchange with [Dr.] Ryan, [Dr.] Korson asked, "Did [MA] DCF really start the meeting with announcement of punishment?"

"It was not punishment," the psychiatrist countered.

"How can a more restrictive visitation plan be viewed as something other than a punishment?" [Dr.] Korson replied, adding, "I know it's tough and I know they're tough, but if your plan is to hopefully unite this family, you have to give them a reason to believe you."

A few days later, state workers gave the Pelletiers a "service plan" that spelled out in writing what they would need to do for the agency to consider returning Justina to their custody. Although the parents continued to reject [Boston] Children's [Hospital's] doctors' new psychiatric diagnosis for their daughter, the service plan made it clear that they would have to change if they wanted her back. "Parents must acknowledge and demonstrate an understanding of Justina's medical and psychiatric needs as well as her emotional needs," the document stipulated, "including an understanding of her diagnosis of somatoform disorder."

Later, in the same article, "Dr. David DeMaso, the hospital's noted psychiatrist-in-chief," was questioned about this, see [16]:

Asked in an interview to explain how parents could be told that they had no choice but to accept the hospital's diagnosis of somatoform disorder as a condition of regaining custody, DeMaso stressed that it wasn't up to [Boston] Children's [Hospital] to determine custody. "That's [MA] DCF," he said.

Added a hospital spokesman: "We can't be responsible for what [MA] DCF says or does."

The unspoken significance of such acceptance is that it would have been tantamount to Justina's parents admitting that BCH and MA DCF had been correct; it would have served, effectively, as a blatantly coerced confession to the crime of medical child abuse.

Throughout all of this, Dr. Korson, to his credit as a healer and the Chief of Metabolism at Tufts Medical Center, expressed his concern about the treatment of Justina and her family. [14,16,11,31 ¶ 83] He also raised important issues about the experimental nature of what was done to Justina. The following is from one of his e-mails, displayed on screen as part of [11: "Mitochondrial Mystery - The Justina Pelletier Case" - WTIC-TV - Approx. 2013-12-19], emphasis added:

...[somatoform] disorder is a chemical one, i.e. there is no blood test or other investigation that can prove the diagnosis. It is a clinical hunch, a best guess. The [BCH] team has demanded that Justina be removed from the home and severe restrictions imposed on contact with her parents. This represents the most severe and intrusive intervention a patient can undergo, far more than a cecostomy. For a clinical hunch. Without a proven diagnosis, her diagnosis should be considered a hypothesis and the current hospitalization an "experimental situation." And perhaps that is appropriate in this situation.

The FDA and NIH oversee clinical trials for many devices and drugs which are experimental. In order to protect the public, there is very strict scrutiny of the trials. The parameters for monitoring are determined by a group of peers unconnected to the investigations and regular reporting is required. If Justina's admission is an experimental process to evaluate an hypothesis, what's the monitoring plan? Who is scrutinizing the process? If the hypothesis is incorrect, or partially incorrect, who is advocating for Justina's medical condition and how?

I am dismayed by the very opaque nature of Justina's evaluation. I heard nothing for days when these issues were first developing at [Boston] Children's [Hospital] despite being the physician who referred Justina to the [Boston] Children's [Hospital] E.R. I was concerned when Dr. Alex Flores, Justina's GI physician responsible for Justina's cecostomy (up to that point, the patient's main intrusive medical intervention) had not been called to participate in the evaluation process until the situation had escalated. I was discouraged when the [Boston] Children's [Hospital] team, three weeks into the admission, had not made any effort to contact community providers and teachers who had known Justina over a long period of time. And I was disillusioned when [Boston] Children’s [Hospital] refused to engage in any dialogue with Justina’s treatment team at Tufts. I have heard nothing from the [Boston] Children's [Hospital] team since the hearing at which point I provided testimony. I asked Dr. Flores yesterday his impression of Justina's course. He told me that "I was unable to see her due to legal restrictions. I will talk to 'neuro attending' next week."

So now I am writing because it feels like Justina's treatment team is out to prove the diagnosis at all costs. So again, where is the objective scrutiny? Who is asking the team on a weekly basis, for example, for specific updates on Justina's different medical and psychological issues to gauge process?

Thanks for helping me to understand this process.

Mark Korson, MD

This e-mail was addressed to Justina's guardian ad-litem.[16] Portions of this same message were published elsewhere, including The Boston Globe, which confirmed that BCH and MA DCF refused or ignored Dr. Korson's multiple requests for a roundtable meeting to attempt to reach a consensus diagnosis.[14,16,27]

In addition to the above, The Boston Globe clearly gained access to internal records from both BCH and MA DCF that were made after the Pelletier family lost custody of Justina.[14,16] Having lost legal custody as well as having been totally and intentionally cut out of Justina's medical treatment, it is highly unlikely that her parents even had access to those records.[30] It is far more likely that this information was provided to The Boston Globe by source(s) at BCH and/or MA DCF. Regardless of its source(s) for this inside information, The Boston Globe printed a large amount of mitigating text favorable to BCH while sparing the hospital from some of the most damaging content, including the full text of Dr. Korson's e-mail above, as well as written statements from highly qualified critics which will be quoted later.[47,48]

This is potentially relevant because on November 7th, 2013, a "gag order" was issued by the State juvenile court, seeking to prevent Justina's parents from speaking to the media.[12,23,43] WTIC-TV reporter Beau Berman, who would go on to win The Edward R. Murrow Award for his damning coverage of Justina's case, commented on this, see [12: "Boston Children's Hospital Under Fire" - The Blaze - 2013-11-25]:

One thing that's interesting is that I have several sources that tell me that a newspaper had also been working on this story concurrently as we had been working on it, and trying to do a broader piece about not just this girl, in question, but other girls like Cristy has mentioned and or patients rather, and that newspaper has been working on this story since April, yet the judge only issued this gag order when our cameras were outside the court on November 7th.

Justina's father said that the gag order was issued after Berman's coverage started to air because "Boston Children's [Hospital] was up in arms."_49] BCH appears to routinely use its influence to have the courts issue these crippling, speech and criticism chilling, gag orders. At the time of Berman's comment above, Cristy Balcells, Executive Director of MitoAction, said "I know personally of two other families under a gag order from BCH."[12,50]

At the same time these at best questionably legal gag orders[51] curtail criticism about its behavior towards a growing number of patients and their families, BCH takes great effort to have favorable information about itself disseminated to the public, including on its own website, where it boasts it is "home to the world's largest research enterprise based at a pediatric hospital" with "$225 million in annual funding, including more federal funding than any other pediatric facility."[52] Additionally, BCH has sought to have civil complaints for improper employment and workplace practices against it sealed from the public.[53]

So, in addition to the obvious, disturbing, specter of a technically private, though largely government funded organization using its political connections to take responsibility for medical decisions away from parents under less than honest and accurate circumstances, while simultaneously leveraging those same political connections to have courts silence parents and chill public scrutiny and criticism, these well-known and well documented patterns of behavior clearly demonstrate that BCH cares a lot, and perhaps most of all, about its reputation and public image. This is obviously disturbing, but its connection to the use of torture/CIDT will be explained shortly.






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