Imprisoned human rights activist, journalist, and author Martin Gottesfeld wrote this article from solitary confinement on November 20th, 2016, the 48th day of his prison hunger strike. Gottesfeld is charged by U.S. Attorney Carmen Ortiz with knocking Boston Children’s Hospital off the Internet in an effort to protect then 15-year-old patient Justina Pelletier. He is married to Dana Gottesfeld.
In February 2013, Justina Pelletier arrived at the Boston Children’s Hospital ER with a referral to see her gastroenterologist. However, instead she was seen by a neurology resident 7 months out of medical training and a non-MD psychologist, who questioned the teen’s diagnosis of mitochondrial disease, a physical disorder known to run in families. Instead, these new practitioners believed Justina to be suffering from a psychiatric condition, and when they demanded various medications be stopped, it touched off a bitter dispute. Her parents were stripped of custody, and against their wishes Justina was locked in the hospital’s psych ward. She spent a total of 16 months away from her family while her condition deteriorated before their terrified eyes.
Regarding my involvement in this case, I am often questioned by journalists, and people in public comments, with something along the lines of “How did you know Boston Children’s Hospital’s was wrong about Justina’s diagnosis?” Skeptics often remind me Boston Children’s Hospital is one of the top pediatric institutions in the world and that I’m not a doctor and didn’t go to medical school.
First, for the record, we now know with the 100% certainty only 20/20 hindsight can provide, that Boston Children’s Hospital did get it wrong. Justina does suffer from mitochondrial disease, and not the psychological diagnosis the otherwise renowned pediatric research mecca came up with. Further, even if Boston Children’s Hospital had been right, which again, they clearly were not, a correct diagnosis does not justify human rights violations, and Justina endured abuse and even torture, in clear violation of international humanitarian law. So it didn’t really matter to me which doctors had it right, they all took an oath to “do no harm,” and Justina was hurt very badly.
That being said, I and many others were anywhere from pretty sure to totally convinced that Boston Children’s Hospital had it wrong. But how did we know?
I can’t speak for the other #FreeJustina supporters, many of whom had firsthand experience with mitochondrial disease and/or other aliments commonly misdiagnosed as psychological, and many of whom had been through similar experiences themselves. Speaking for myself though, while it’s undeniably true that I am not a doctor, medicine is a science, and like all sciences, there are basic practices and methodologies we should all expect to see. Just as important, there are those we should expect not to see. Again, these apply generally to any science, from physics, to chemistry, biology, even medicine, and sadly sometimes even our most esteemed institutions employ people who make fundamental mistakes in their scientific pursuits. Let us not forget that as recently as the 1970’s lobotomy was a common and widely accepted practice.
One of the first things to peek my curiosity and disturb me about Justina’s care at Boston Children’s was the manner in which other experts were blocked out of the decision making process. It seemed any other specialist who could have challenged the psychological diagnosis, from Justina’s primary “mito” specialist across town, to her gastroenterologist at Children’s, who had performed surgery on her for mitochondrial disease related complications, was shut out. Her parents were blocked from seeking second opinions as well. Proper science functions with peer review, where findings are subject to scrutiny from other professionals. For instance, Einstein’s theories of relativity weren’t just blindly accepted as sacrosanct, they were subjected to rigorous scientific scrutiny and testing via the experiments of others before gaining wide acceptance.
No one in science, not even Einstein or Sheldon Cooper gets to say “It’s this way because I say so and you better not dare to question it.” Scientists are supposed to attempt to falsify their hypotheses before relying on them. This means good scientists try to prove things wrong and not right. They also are supposed to share data and findings so others can try to prove them wrong as well. So, the lack of attempts of at falsification at Boston Children’s was also profoundly disturbing.
Further, the new diagnosis did not appear to be properly reevaluated over time, even as her condition worsened, providing evidence the new psychological hypothesis was wrong. Justina’s Boston Children’s doctors appeared to suffer from a well-known phenomenon called “confirmation bias.” Basically put, they appeared to be so invested in their psychological diagnosis, and at least on a subconscious level, so fearful of the consequences of it being incorrect that they were blinded to the truth right before their eyes. Ironically, it seems it was Justina’s doctors at Boston Children’s who had psychological issues.
The Boston Children’s doctors should have also pondered the Hippocratic Oath they took. Part of that solemn promise is not to do the work of a specialist when one is available. Basically, just as an orthopedist should leave quadruple bypasses to cardiac surgeons, the questioning of mito diagnoses should be left to metabolic and genetics specialists. Further, those with less medical experience, and especially expertise in a given specialty, like a resident and a non-MD psychologist, should defer to those with greater, more relevant medical training, experience, and history with the specific patient, like the renowned mitochondrial disease expert who diagnosed Justina and had been treating her for over a year.
Another major shortcoming in basic scientific practice was demonstrated at Boston Children’s by Dr. Alice Newton, the head of the team that filed the paperwork with the state that resulted in Justina being taken from her family for over a year. Before weighing in and taking action, Dr. Newton failed to actually meet and examine Justina herself. She did not attempt to falsify nor meaningfully peer review the findings of the neurology resident and non-MD psychologist before parroting them off to the state with her seemingly much weightier credentials supporting their suppositions.
In the months and years that would follow, Dr. Newton’s findings in other cases would be called into question, seriously damaging her reputation. Between two other high profile cases where Dr. Newton claimed there certainly had been abuse, over a dozen other medical professionals would challenge her findings. There was the now-infamous “Irish Nanny’’ case, where a caregiver spent more than two years behind bars based on Dr. Newton’s claims, only to see the scientific community find those claims wanting. The nanny was released and returned to Ireland.
There was also the case of Nathan Wilson. Baby Nathan’s father spent years under indictment for his death based on Dr. Newton’s supposed findings. In the end though, there too a cacophony of other medical experts challenged Dr. Newton’s conclusions and the charges were dropped.
In these two cases, peer review and falsification functioned as they are supposed to, albeit too heavily delayed (but that’s another story). One scientist, proceeding with flawed methodology and dubious theories was held in check by her peers, and questionable finding were properly disposed of based on agreement across a wider scientific establishment. I didn’t know about the two above cases at the time, but there was already a suspicious odor coming from Dr. Newton based on yet more incidents even more similar to Justina’s, involving mitochondrial diseases as well as other aliments mistaken for the very same psychological condition by the very same Boston Children’s practitioners.
At the time, TheBlaze ran a story detailing a litany of similar cases where the hospital had gotten it wrong, with some dating back twenty years. Other stories were also circulating online, such as the case of Elizabeth Wray, a teenager suffering from a condition called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS,) who was misdiagnosed with the same psychological condition, by the same non-MD psychologist as Justina. She had left the psychiatric ward the day before Justina entered, seemingly taking her place.
Even more disturbing, many people without well-funded criminal defenses remain in jail based on Dr. Newton’s findings and ”expert” testimony. I suspect many if not most don’t belong there. Further, since the state so often relies on Dr. Newton’s work, it is certainly fair to question whether her claims are objectively scrutinized before being taken as fact by authorities. The state even appears to have tried to bully a medical examiner into going along with Dr. Newton’s findings. Add to this a known tendency for state officials to blindly rely on world-renowned Boston Children’s Hospital, and all this seems to be a recipe for disaster for defendants like the Irish nanny, the Wilson father, and others, just like it was for pediatric patients such as Justina Pelletier, Elizabeth Wray, and similarly situated children.
Worse than sloppy science though are outright lies. When I first started looking into Justina’s case, the Boston Globe had detailed serious issues with the affidavit that was used to strip Justina’s parents of custody. Despite the fact that Boston Children’s clearly knew who had diagnosed Justina, and that he had even counseled Dr. Newton to be cautious about accusing the Pelletiers, the affidavit claimed that hospital doctors didn’t know the source of her mitochondrial diagnosis. Dr. Newton’s team also told the state they had serious concerns about Justina’s feeding tube and cecostomy button, yet right after her parents were stripped of custody, the hospital determined both to be necessary.
As you can imagine, at this point I was already quite concerned, but for me anyways, the worst had yet to come. As a First Amendment-championing American, as well as a human rights activist, I have serious fears whenever people aren’t allowed to speak to the press. Across the globe, the worst human rights abuses are carried out in secrecy. When Justina’s parents started speaking out, they were subjected to a constitutional “gag order,” prohibiting them from conversing with the media. If Boston Children’s was so sure of its psychological diagnosis, then why stop the Pelletiers from going to the press?
Additionally, the Boston Children’s treatment plan prohibited Justina and her parents from discussing her condition or care, effectively silencing a learning disabled child, who was never accused of anything. Her family was also forbidden from taking photos of her. While there was a theoretical reason to prevent medical discussions between Justina and her parents (albeit a weak and incorrect one) there was no good reason I could find for the photography ban, other than further suppression of the story of Justina’s suffering.
Thankfully though, the truth did get out. Justina began smuggling heart-wrenching notes to her family, hidden in artwork, which detailed her mistreatment. Justina’s father broke the gag order on national tv, and photos of her without her painkillers, heart and brain prescriptions, as well as other medications, surfaced on line.
The final confirmations for me came from two qualified whistleblowers. First, a former federal prosecutor and the longest-tenured board member of the Massachusetts Society for the Prevention of Cruelty to Children wrote a scathing demand to the Department of Public Health. He told them the psychiatric ward where Justina had been placed against both her and her parents’ wills “appears virtually synonymous with abuse for many children.” He had serious concerns about the stifling of medical debate across many cases like Justina’s, and told the department to either shut down the psych ward or take steps to ensure the safety of children there. He also spoke about civil rights, as well as the rights of disabled children.
Additionally, a former Boston Children’s Hospital psychiatric nurse turned whistleblower actually filed a mandated reporter child abuse complaint, the same procedure used to strip Justina’s parents of custody, against the hospital and state officials overseeing Justina’s case. She mentioned how Justina’s pain was being ignored, how the shroud of confidentiality was enabling abuse, and how Justina had been forced to give up her basic human rights. She said it would be far more appropriate to call the treatment being forced upon Justina “torture.” Based on the sheer mountain of credible evidence, much of which is not mentioned in this article, it seemed crystal clear that she was right, and therefor our government has an obligation under the International U.N. Convention Against Torture, to investigate, prosecute, and punish what was done to a wholly innocent, learning disabled, teenage girl who has been confined to a wheelchair ever since. Sadly though, that doesn’t seem to be on the agenda.
In conclusion, based on the totality of what was done, I was nearly certain that Boston Children’s got it wrong in the Pelletier case, and I think you don’t have to posses a medical degree to reach the same findings. Further, in hindsight, the reality has now been clearly established that Justina always suffered from mito, and her symptoms have physical causes. Even if the hospital had been correct though, nothing could justify the 16 months of torture that Ms. Pelletier was forced to endure in the name of treatment. Sadly, oversight at all levels, from Boston Children’s to the state departments all the way to the courts failed to protect her, and that certainly should be an accreditation issue for the hospital. For those who would like to know more, I submitted a lengthy and detailed report to the U.N and Department of Justice delving much deeper into these events and the relevant international treaties.
I hope this article clarifies that the people of the #FreeJustina movement were not acting on mere hunches, and that it once and for all sets the record straight. That being said, I’ll do as I usually do and end with a question. When you learn about something like this happening to an innocent girl and her family, and understand that her very life might be at stake, what do you do? Do you stand by or do you act?