Case Files 02: Justina Pelletier Part 1

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Hello, it's Andrea Dunlop.

Welcome to Nobody Should Believe Me case files.

Today is the first in our multi-part series on the Justina Pelletier case, and I am diving into it with friend of the show, Dr.

Becks.

So, Dr.

Becks is a pediatric hospitalist from Florida.

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Hello, Dr.

Bags.

Thank you so much for joining us today to talk about the Justina Pelletier case.

This is a case that we are bringing to the main feed by popular request.

We have covered it in some detail on the Patreon feed, but it was time to bring it to the main stage because this is one of the cases I get asked about the most.

I would say other than Gypsy Rose Blanchard and the Maya Kowalski case, this is probably the most well-known sort of Munchausen by proxy case slash sort of court case that has to do with Munchausen by proxy, because of course, much like the Kowalski case, the lawsuit piece, the piece that happened in court is not actually a perpetrator on trial.

It's a family suit in the hospital.

So yeah.

Hi, Bex.

How are you doing?

Hi, I'm good.

How are you?

I'm pretty good.

You know, kids are at school.

New world for us.

Oh, that's right.

Yeah.

So, Bex, just because you haven't been on the main feed for a minute, can you just tell us who you are and what you do and how you come to this area specifically?

Sure.

So I am Dr.

Becks, and I am a practicing pediatric hospitalist in Orlando, Florida for the last 12 years.

Over my career, unfortunately, I've seen a few severe cases of Munchhausen by proxy.

And during one of them, I found this podcast and started listening to it.

And really, after hearing everything that was happening at Cook Children's and everything in season one, it just really made me realize that I'm not the only one going through these cases and that it's so important that we advocate for these kids and get the word out.

And then Andrea and I became friends, started talking.

And then unfortunately, the Kowalski case happened just down the street in Tampa and very much hit home for me.

And we started covering the case on the podcast and really got involved in kind of what was going on behind the scenes.

And that's what got me here today.

But I've also been speaking in Florida and around the country to providers about medical child abuse, much housing by proxy.

And I'm just really glad to be here.

And we are sorry that we need you and happy to have you.

I guess that's the best way to describe anybody who comes to this field.

So you've been a great contributor to the show.

So let's dive into this Justina Pelletier case.

So just a note at the top of this episode that we are citing some sources here.

Our main sources for this are the series that the Boston Globe did about this case.

They did some really excellent, very thorough reporting on this case.

I will link to that in the show notes.

We read a handful of other things for the Patreon.

We watched The Battle for Justina Pelletier, which was a peacock series that involved some friends of the show, including B.

Yorker.

She made an appearance on that one.

And we have some original source documents that we were able to get via a FOIA request, but we did not do like a full, full deep dive.

And that actually is kind of one of the purposes of doing these case file episodes is for those cases that we really want to talk about that we cannot sort of devote the resources of an entire season to.

And this is certainly one of them.

So this case involves a 14-year-old girl, Justina Pelletier, who was hospitalized at Boston Children's Hospital starting in February of 2013 after she was brought to the hospital with severe stomach pain and trouble walking.

I believe those were her symptoms.

Is that right, Bex?

That's correct.

And they even mentioned some slurred speech and other kind of altered mental status was another word that came up.

But the severe stomach pain is, I think, why they ended up at Boston Children's because a GI specialist that they had seen before at Tufts had now begun his practice at Boston Children's.

And that's why it was recommended that they go there.

Yeah, and there were some strange circumstances sort of right out of the gate with this ER visit.

One of the things that made it strange was this hospital was not particularly close to where they lived.

This family actually lived in Connecticut.

This was definitely not the closest hospital to go to, and it was during a snowstorm.

So already just some sort of strange scene setting.

And again, for those of us who followed us on the journey of the Kowalski case, some real similarities right off the bat in terms of like it happening in this very dramatic way.

So they bring her to the hospital, and Justina had recently been diagnosed by a doctor at Tufts, which is in the same area, very well-known, well-respected children's hospital, by a doctor called Mark Corson.

She had been diagnosed with mitochondrial disease.

So this is really a huge, huge part of this case.

So I really wanted to start us off with a description of what mitochondrial disorders are.

Bex, can you give us some context there?

This is hard to do in a short period.

I think I've tried a couple times and it's difficult.

But as you guys probably know, the basic things you know about mitochondria are that they're this kind of energy maker of the cell.

Powerhouse of the cell.

I didn't say it last time, but I'll say it this time.

So they are the powerhouse of the cell and pretty much most of the cells in our body.

The thing is, the cells that need those mitochondria the most are the ones in the organs that need the most energy.

So that's your brain, your heart, your muscles, your liver.

And so if you think about it, if there is is a problem with those mitochondria, either in how many you have or the function of them, it's going to affect those organs that need energy the most.

The thing that comes up a lot with mitochondrial disease is there are the mitochondrial diseases that we know a lot about that have been studied, that the genetics have been found and the patterns have proved to be true over time.

And then there is this kind of whole world of mitochondrial disease that is very kind of a catch-all for a lot of symptoms.

And the question always becomes:

if you do testing and find something wrong with the mitochondria, is it really the cause of every symptom?

Is it a cause of some of the symptoms?

My first experience with mitochondrial disease was actually the patient that brought me to pediatrics.

He had mitochondrial DNA depletion syndrome.

And that is the most devastating form of mitochondrial disease.

And he passed away very early on in life.

So, again, there are mitochondrial diseases that are absolutely debilitating and devastating that affect all the organs in the body.

And then there are all of these kind of generalized symptoms and things that I think just in the last maybe five or 10 years are really getting lumped into what we call mitochondrial disease.

And I think we're still learning a lot.

The biggest thing is there is not one clear tried and true test.

However, there are blood, urine, spinal fluid tests that kind of can lean you in one direction.

direction and there are genetic tests and then you get into something like muscle and liver biopsies would give us the most significant outcomes.

And I think if you put it in kind of layman's terms, if someone is weak from mitochondrial disease or is having muscle symptoms from mitochondrial disease and you do a muscle biopsy, one would anticipate finding something wrong with the muscle fibers themselves.

Again, so you kind of link the symptoms the patient is having.

with the results of the tests.

That makes sense.

And I think something that, again, we've already sort of talked about this at length and I still find myself sort of going around in circles about this, but a lot of times times when you hear about this mitochondrial diseases are something that come up a lot in Munches and my proxy cases.

And with the caveat that I always add, is not a one-to-one.

There are obviously children that legitimately have these diseases.

But something that I can't quite get a handle on is the question of like, is this one thing or are there various diseases that are associated with the mitochondrial?

Like the way that you would say, for instance, okay, someone has cancer and we know what cancer is, right?

We in general know, obviously doctors specifically know, but like you would say, oh, they have breast cancer, they have pancreatic cancer, they have a specific type of cancer, right?

It's not just people with cancer.

And I hear a lot of people saying people with quote mito.

Is it one thing or is it sort of a grouping of diseases?

That's the hard part is it's a grouping of diseases.

And I think I was looking today and I think there's maybe 20 mitochondrial diseases that we have true names for that we really understand the genetics behind and really understand the pathophysiology of how they affect either the brain or the liver, specifically like the condition I was talking about.

But those ones are the more severe.

Those are the ones that are studied the most, if that makes sense, because that's what we need to have answers for to see if we can fix because these children are dying at an early age or extremely debilitated.

I think the hard part is this big other world of mitochondrial disease.

And the question comes up, if you tested my and your mitochondrial DNA, would one of us have a glitch, right?

And then does it explain anything that we're experiencing in our lives, or does it explain nothing?

And that's that causation that is going to be very difficult to prove.

That's why I said if you have liver dysfunction and you're saying that is truly from the mitochondria, then I would argue a liver biopsy or those specific tests should be abnormal.

So, again, if you're going to link one symptom to the mitochondria, then there would be more specific tests to do versus just generally you have something wrong with your mitochondria and you have a thousand symptoms.

How can you say which of those are from that issue?

Unfortunately, I think part of the reason that some of these things really end up in showing up in a lot of cases, we see these sort of specific diseases and disorders show up a lot in monchasombroxy cases is when there is kind of an involving science, when it is difficult to test for, right?

So you might have a clinical diagnosis, which I believe the diagnosis from Dr.

Mark Corson was a clinical diagnosis.

Is that right, Dr.

Rex?

That's correct.

He supposedly diagnosed Justina's older sister, Jessica, which actually did come up in the trial and did the testing for mitochondrial disease.

And he then said, given sister had positive testing, at least from what he says, and Justina is showing some symptoms, then we will clinically say she too has mitochondrial disease.

Now, we can talk about it later, but she did end up having some of the testing later on that comes up again in the trial.

Right.

Just to confirm a clinical diagnosis, what does that mean versus some of this other kind of testing that we're talking about?

So unfortunately, there are some conditions in medicine where it is always a clinical diagnosis, meaning we have no blood test, no brain scan, no anything can actually give the diagnosis.

You look for a pattern of symptoms versus in mitochondrial disease, there are these tests.

However, most of them are either invasive or expensive or could cause pain or discomfort to the person undergoing them.

So sometimes physicians will combine family history and the symptoms a child is presenting with to come up with what we call a clinical diagnosis.

Again, if it comes to the point of, you know, more severe illness, I think that's when you start getting into the more confirmatory tests and looking deeper and then expecting if something is the most severe case that you're going to find abnormalities on those tests.

So this is, you know, mitochondrial diseases seems like it's one of these things where like many areas in medicine, or maybe perhaps I could even say like all areas in medicine, the science is evolving, the research is evolving.

And so there is genuinely some gray area.

So this family in February of 2013 shows up at Boston Children's and basically their daughter is just in distress.

In the Peacock documentary series, they showed, I believe, video that the family had taken of her.

She's moaning.

She looks like she's in a lot of pain.

So they bring her to the hospital and they call a neurologist, Dr.

Drayan Peters, who sees Justina and Bex, can you kind of walk us through what happens next on the medical side?

So I think right off the bat, the Paletiers went to Boston Children's again, expecting to see Dr.

Flores or someone in the GI department because it seems.

Oh, sorry, because they had previously had some specialists right at the GA and because the main symptom was stomach pain.

Correct.

They were hoping to see a specific doctor there.

But then when they got to the emergency room, what was more pressing to the ER doctors was the debilitating neurologic type symptom she was displaying.

So again, she was not walking.

She was not speaking or was slurring her speech, depending on which article I was reading.

What they said was altered mental status.

I know she was screaming out again, either from pain or discomfort.

And so neurology was actually consulted from the emergency room.

And I think right off the bat, the platiers were a little bit confused, again, because they went in thinking GI was going to be the primary.

specialty.

Then Dr.

Peters came in and did his full neurologic exam.

And often I can say a good neurologic exam can rule out a lot of the big bad things just because of the patterns of how a patient presents.

And so he became concerned after hearing this story and speaking to other colleagues and having other people examine Justina that she fell more into the kind of big diagnosis of somatoform disorder.

Okay.

And can you tell us, what does somatoform disorder mean?

This is another one.

So anyone who listened on the Patreon feed to our episode about the podcast hysterical or about mass hysteria, that is kind of a big version of what we call conversion disorder, which we did talk a lot about in the Kowalski case and which also comes up quite a bit in some of these Munchausen by proxy cases.

Just so you understand, conversion disorder or what we now call functional neurologic disorder comes under the umbrella of somatoform.

So somatoform disorders is probably the oldest terminology, I would say, and it is the big umbrella under which conversion, functional neurologic symptoms, pain disorders that are not explained by there's no injury or no true, you know, you can't find that true pathophysiology for it.

And then kind of functional abdominal pain, other things like that.

All of these things fit under somatiform disorder.

And often the word somatiform or that bigger term is used when it kind of encompasses a little bit.

of all of those.

So maybe there are neurologic symptoms and GI symptoms and other factors.

And often the thought is it's not that the patient is not experiencing the symptoms.

It's that the patient is truly experiencing the symptoms, but the cause of those symptoms stems from some psychological stressor or social stressor or something kind of deeper seated that is then showing itself through these outward symptoms.

The thing that comes up all the time when I read reporting on a case that involves something like conversion disorder or systematiform disorder is the doctor said it was all in her head.

That's not quite what that means, as Ivex.

No, I actually just gave a talk to the residents and I called it all in your head because I think that terminology that we hear a lot.

And I think it was an interesting point in that the hysterical case that we talked about.

When someone said it felt more like an accusation than a diagnosis, that really stuck with me because I think that is how it can sound, or I think you can hear it.

And I even started looking up on some pretty reputable sites trying to get a true definition of somatoform disorder or functional neurologic disorder.

And it starts with a psychological condition.

And I think that's where we struggle, because I would argue it starts with the physical symptoms.

That's what we're seeing.

And that's what the patient is experiencing.

And then looking for any physiologic true, like I can find something on a test or on a scan that gives me an answer, barring finding those things.

and understanding every human being in 2024 has some form of psychosocial stress.

Is there something deeper seated that's leading to it?

And I think that's where we lose people sometimes is why wouldn't you keep digging for that physical reason?

And that's a very tough conversation to say, because now the tests become more of the problem or now the tests become more of a risky or we have enough people confident in the diagnosis that we've rolled out the biggest, baddest things.

And we want to work at this now from all the outside angles.

We're not giving up.

We're not saying we're not here.

We're saying saying the treatment pathway takes another route.

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i think especially when you're talking about cases like this one that involve a teenage girl as the patient you know there is a significant history in our country well everywhere of the medical establishment disregarding the reports from female patients disregarding female pain period i mean i every time i come across one of these, I sort of think about that TikTok audio.

If anyone remembers that, we've never really studied the female body because it's true, we haven't.

It's like it's very recent that women were included in clinical trials.

I mean, that's only since the 1990s.

I mean, we sort of only started studying the female body at all in like the 1970s.

So it's quite different from the male body, as it turns out, being able to have babies and all that kind of thing.

I think the skepticism with which a diagnosis like this is treated is not only understandable, but I think like there is some skepticism about how the medical treatment interacts with female patients that is completely warranted.

So I think that that's just like a really important framing.

So this family comes in, they see neurology, they have basically a working diagnosis then of somatiform disorder, and they put together a treatment plan to basically demedicalize Justina Pelletier and give her the treatment for somatiform disorder, which I believe is some combination of psychological care and then also physical therapy and occupational therapy.

Is that right, Bex?

That's correct.

So we talked about this again in the Kolsky case.

There's a lot of overlap, but that really at the end of the day, treating most of these conditions comes down to the cognitive behavioral therapy, the occupational therapy, the physical therapy.

Now, unfortunately, both family and patient need to...

be on board.

It is hard to do occupational therapy with a patient who doesn't want to do occupational therapy.

So really working through sometimes some of the psychological components or working into finding some therapeutic relationship between the providers and the patient, or, you know, if there are providers that connect more with the patient, you know, working on those relationships first so that then they can trust and be an active participant.

Because otherwise, it's really hard.

I mean, if you've gone into physical therapy ever for an injury and the pain is so severe, you don't want to be involved, it's much harder to see the light at the end of the tunnel, I think.

So having buy-in is important.

And I think Dr.

Peters kind of started this whole kind of road towards, again, it's not we're giving up.

It's not we're stopping treating.

It's that we're moving to a different pathway in the treatment and we still want to be here for it and we want to help her through it.

And just so people understand, again, because this area is so vague, but mitochondrial disease in and of itself does not have a cure.

or really a true treatment that we know works in every case, you treat symptoms.

And then there is kind of what we call a mitochondrial cocktail, which is a group of vitamins and minerals and things that are thought to be the precursors to some of what the mitochondria used to work.

And so the thought is: if you really build up the body's supplies of those, we'll at least let the mitochondria that are working kind of do their thing.

But again, there's no cure.

So in this case, compared to the Mikwalski case, where she was at that time on an extremely large number of medications and doses of medications, in this case, again, we don't have the medical records, but it sounds like the medications that she came in on were more this kind of cocktail of things for her mitochondrial disease versus things like ketamine, et cetera, that came up in the Kwaski case.

Right.

So not necessarily as sort of life-threatening as something like ketamine treatments.

Correct.

Just to unpack the mito cocktail, as it's called, I've seen that called that a couple times.

Is this a relatively like benign treatment path, or are there some sort of more serious medications in this?

And again, that's what I don't know in this case, because I know that came up in the court or in the malpractice trial that they, quote, weren't treating her mitochondrial disease, but were in fact treating her somatoform disorder.

And I can't really piece that together because unless she was on some of these cocktails that they do use higher doses than what.

you know, we would maybe typically be comfortable with.

Coenzyme Q10 is one that's a big one that comes out as being involved in the mitochondria, but you can buy that over the counter.

So most of these things are things you could buy in just a supplement store at the pharmacy.

So, the question becomes: I don't know exactly what she was on or what doses, but there are providers out there who have kind of their own quote-unquote cocktail where they have kind of tried some other things and added it into their cocktail.

So, I just, without her records, I don't know.

Yeah, fair enough.

So, originally, Justina's parents, Linda and Lou Pelletier, were reportedly on board with this treatment plan.

And then things

just unraveled and exploded extremely fast.

So they initially agreed to the treatment plan, but then Lou Pelletier changed his mind and tried to discharge Justina from the hospital against medical advice.

And when they wouldn't let him do that, because I think what we can sort of glean from this was there was already some significant concerns about abuse, and we'll get into why that was.

So when they refused to let him discharge Justina, he called the police and said, this hospital is trying to kidnap my child.

So things escalated really quickly.

I mean, this whole thing goes down.

I mean, I can visualize it in my head, to be honest, because I've been in situations at the hospital where someone does escalate.

And it's a frightening experience.

But, you know, there's security at every hospital who responded.

And then because he called the police, the police did respond.

And there's different descriptions, but it sounds like from the staff perspective, Lou was being threatening, said red in the face, yelling and being, you know, kind of intimidating.

And then Dr.

Peters was sitting in a meeting at another building and he got paid that this was all happening.

And he actually left the meeting and came running over.

And his reasoning was he really was concerned for Justina.

And he mentioned that at that point, she wasn't walking, she wasn't eating, she had no way of getting nutrition.

So he felt, regardless of what you believed was going on in the case, that she was not safe to leave the hospital without some plan in place for nutrition and ambulation and all of those things.

And that's what prompted the call was there were already concerns, but now they were trying to take the patient out of the hospital in a state that they did not believe was safe or appropriate.

Right, because there does become this question with discharge about like, is the patient even stable enough to really safely leave the hospital?

Right.

And in the state of Florida, I can say that those are the times the hospital has a right to kind of do that emergency where if you feel the child is not safe, for instance, they're intubated with a tube down their throat, they're on, you know, drips of medications or things that without which they could die or that they are in imminent risk of harm or death, like as in they have no way to feed themselves or get hydration, especially in Florida, or to get a medication that is life-saving and you don't know that they would have that ability leaving the hospital, then you do have grounds to keep the child for the reason of safety until then the courts can do some kind of an emergency order order and kind of take it out of the hospital's hands.

So, just to kind of give some extra context to why these doctors were so concerned, Justina was in really bad shape when she showed up at the hospital, and she had quite an extensive medical history walking in.

So, Dr.

Mex, can you kind of walk us through what we know about what had happened to Justina before this incident?

It sounds like she had been a premature baby.

Again, we don't know to what extent.

There are pictures of her as an infant with a tube in her nose to feed, but a a lot of preemie babies have some component of that.

And then that there was a story of her having had some kind of a stroke either early in her neonatal period or potentially when she was in the womb, which again does happen with different conditions in pregnancy.

But then apart for some maybe developmental delays and little things here and there, she was ice skating.

She was going to school, although I understand maybe a little bit behind in certain areas, but looked like a healthy, thriving, normal weight, normal size child at least from the pictures and again this is not i could say it a lot clearer in the qualski case because of everything we had access to but this is gleaned from the documentary and the pictures and you know the things that have come out at some point in 2010 is when she first developed the bouts of abdominal pain she had lost a lot of weight was seen at connecticut children's and this kind of started this whole gi pathway where she was taken to the operating room because it sounds like they did not know what was the cause of her pain and they found what's called a congenital band, which is kind of a band of tissue that's supposed to absorb or dissolve during the process of fetal development that kind of sticks around.

So, some babies, for instance, a band will wrap around their hand and they won't form their hand completely.

It can be seen in a lot of different conditions, but it sounds like it was wrapped somewhere around her intestines.

And so, as a result, they had to go in and snip the band and kind of release that, thinking that was the cause of her abdominal pain.

And again, just from my experience, if she's she's lived with it for 14 years, you know, the question becomes why all of a sudden were things so much more severe and, you know, things can intermittently obstruct.

It's tough to say because it doesn't seem like the symptoms went away much after that surgery.

Right.

So kind of what you're saying about this sort of condition that she had the serious surgery, a serious abdominal surgery on previous to the hospitalization at Boston Children's, this is something that would be congenital, meaning you're born with it.

So why would it then suddenly start causing?

There's a possibility that that can happen.

But what we do know from the reports and the medical history and the reports of the family is that this surgery did not solve her gastrointestinal issues.

And that was something that had really plagued her.

Again, as you said, she had a feeding tube.

I believe she had a feeding tube when she was brought to Boston children.

Is that right?

I think she had an NG tube at that time as well in her nose.

And then she also had a sicostomy tube, which is another type of tube in the abdomen.

And that one helps children with constipation.

We used to see it the most in kids with spinal cord injury or spina bifida because it is very easy to become constipated when you have neurologic injury in that vicinity.

And so we use the sikostomy tube as a way for children to say flush out their bowel before they went to school in the morning so that they wouldn't have to use a diaper, wouldn't have risk of, you know, having accidents or things at school.

school.

So it was a way for these kids to have kind of a more normal life.

And then it started to be used in kids with chronic significant constipation, again, as a way for families to treat the constipation, especially when kids aren't willing to say, drink all the medicine or take everything they need.

It's a way to kind of go directly to the site of the problem.

And so she had also had that done.

I think that was her two major procedures, apart from the tubes for feeding prior to coming to Boston Children's.

And would the sakostomy tube in constipation, would that also be related to the congenital band or is that something different?

That's what's hard.

Again, not knowing where in the bowel this congenital band was, it's tough because then every time you operate on the bowel, you cause scar tissue, you cause, you know, kids get slowing down of the bowel after a surgery.

So, did the constipation start up after the surgery?

That's the piece that, again, I don't know so much.

The problem is, once you start intervening and once you start doing things to the bowel, sometimes like a child who's in a car accident and has damage to the bowel that has to be removed, unfortunately, from that point on, they are at risk of further bowel issues because it's just not meant to be, you know, operated on and having scar tissue and all those things

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Right.

So that just does speak to like these escalating treatments can sort of cause new problems.

So basically what we do know about this case was she'd had a lengthy history of GI issues and some pretty serious treatments for those that had not resolved it because that was the primary reason she ended up hospitalized.

And certainly, like from what we know about sort of how she was doing and we'll get into sort of how that evolved as she was there.

But, you know, one of the things that stuck with me the most as sort of being a report of something that she was struggling with that.

did not seem to fit into the picture of any of this was that they reported that she wasn't able to brush her teeth by herself when she was hospitalized at Boston Children's.

And that was just so striking because, you know, this is a 14-year-old girl.

And to her family's description, she had been living a mostly normal life until recently.

And, you know, they've, again, they showed video of her ice skating.

I mean, that's sort of one of the most sort of famous pieces of imagery with this is these videos of her ice skating.

And that's very hard to square for me of like a child that can't brush their teeth, but then they're ice skating.

It just, it just sort of doesn't fit together.

So, nonetheless, to take us back to February of 2013, so the parents have this big blowup with the doctors at the hospital, and the hospital ends up calling in what is in Massachusetts called a 51A report to DCF.

And Justina ends up being separated from her family.

And she is what's called sheltered at the hospital, which is also what happened in the Kowalski case, where the court rules a child is now in the custody of the state.

Parents usually have some form of decision-making rights, but that the child is now sheltered in the hospital until another placement is made.

So, the difficult thing in these cases is the child protection team has plenty of cases on their desks that are children that are in very unsafe situations at home, and things are happening, and they need to get to a safe place immediately because there is nowhere else for them to go.

But this child is in the hospital and still undergoing treatment.

Again, the hospital was saying she's not clear to go home to anyone at this point.

So she is sheltered in the hospital.

So meaning her place of living is in the hospital currently, but the courts are involved and they are the ones making the recommendations for where she goes next.

So the hospital could say she's medically cleared to leave the hospital now, but they still can't discharge her until the courts say they can to wherever the next place will be.

Right.

And it's quite complicated in these cases in particular because there usually is some element of medical fragility with the child, whether or not it's because of a legitimate condition or because they've been the victim of abuse or both.

But nonetheless, it's not a child that you can just discharge to anyone who is in the foster system or even another family member necessarily that is deemed safe by the court.

So it's just extra, extra complicated.

So Justina ends up at the hospital for quite a long time.

She is being seen in the Beter V psych ward which just it sounds unfortunately sinister i have not seen any real compelling evidence and we can talk about the kind of whistleblower thing but i have not i have not seen any evidence from this case that anything sinister happened there i just think beter five is a sort of unfortunate name so she was there from february 2013 to january 2014 and during this time this case got a ton of media attention.

And actually, we are going to speak in the next episode to Bo Berman, who is the reporter who broke the story.

He was a local Connecticut news reporter at the time.

But this blows up in the media and there are very conflicting reports during this time period about what is happening to this child.

And

like all of these stories, they become necessarily pretty one-sided because one side, Lou Pelletier in this case.

So this is also an interesting element of the case that regardless of who was the primary alleged perpetrator in the case, Lou Pelletier definitely took center stage as the voice of the family, as the advocate for the family.

He is quite a character.

We'll get into him, but there are very conflicting reports about this at the time of what is happening.

And unfortunately, you know, Lou can say basically whatever he wants at his own risk, obviously, but and the hospital can say nothing because this is a situation where you have a sheltered child and it's a hospital situation.

So both HIPAA and all of the regulations around DCF would apply in this case.

We do know a little bit more about what was happening from the hospital side because this eventually went to trial and we did sort of learn it at that.

But at the time when this story was blowing up it was very one-sided it was the family is saying this and sort of you know these sort of basic communications from the hospital that are about patient safety and sort of all the reasons they can't say anything but obviously that does get to be very lopsided so at the time lou is saying that they've kidnapped her that they're torturing her using very very inflammatory language he's making the rounds doing a lot of things on Fox News and sort of became almost a strange pundit during this time.

So yeah, just talk to us about what Lou Pelletieric got up to while his daughter was hospitalized.

This is unique compared, I think, to the other cases we've looked at where he really is very much in the media and very much kind of front and center in the media about this case.

And as much as it does seem to be this narrative of medical kidnapping or they're holding my child against her will and very much villainizing the hospital.

I've watched some of the footage.

He just seems to enjoy it a little bit.

And I think, you know, some people that knew him have said like that is more his personality.

Like he is more kind of the extroverted one compared to Linda, his wife.

And obviously.

in comparison to both the gypsy rose and the Mayakalski case is there is a mom who is alive and is able to speak on her own behalf and in her own defense and all of those things.

And yet still in this case, it's the father who really kind of is taking center stage.

And he kind of gets in with certain people in the media.

And then there's a Reverend Maloney, I think, who gets involved later and kind of becomes this spokesperson for the family at these rallies.

There's hashtags and things coming up about the case that put it very much in the media, but kind of in this unique niche in the media.

of concern that hospitals could be stealing our children against our will.

I think one of the fascinating things to think about how this case was metabolized by the public and the media is to think about how different things were in 2013.

And then also thinking about how this was sort of the beginnings of what we saw really come to a head with the Kowalski case and how this case in so many ways is a precursor for the Kowalski case.

But nonetheless, yeah, so it was a different era of social media, but Twitter was really the thing back then.

And so folks were talking about this case a lot on Twitter and somebody called Martin Gotzfeld, who has no party to this case.

He's not involved.

He's never met the Pelletiers, decides to insert himself.

At this point, Justina had been hospitalized at Boston Children for a number of months.

And yeah, so tell us about Marty Gotzfeld and then what he decided to do.

So he is known to be a hacker or part of the group Anonymous who has been, you know, affiliated with some of these other big kind of rallying moments in society or big things that are applying to the greater culture, I guess, at the time.

And so he really kind of takes ownership of this as a hacker, as kind of a voice.

He starts hashtagging op Justina,

really starts speaking out against the hospital and what the hospital is doing.

From what Andrea and I have researched, we've read.

the articles and kind of watched through the documentary is, you know, there does seem to be a backstory to Marty.

It seems he was a victim of abuse himself.

There's a lot in his story that probably gets him to where he is.

And we all know that there's a reason we all end up in this on one side or the other, probably.

And so I think that's where he's coming from.

And so he's hearing this story of a child who's being kidnapped by an organization, right?

Which then you go into what anonymous really stands for.

It's this idea of this big pharma corporation is taking a child and kind of seems to really dig in there and not kind of go backwards, not really look into what, you know, where the claims came from in the first place and really took it from this child is being held in the hospital.

So Marty Goxfeld's an interesting character.

David Kushner, a journalist, wrote about him in Rolling Stone.

David Kushner seemed very intent on sort of presenting him as something of a folk hero and sort of really making him like he was this brilliant super hacker.

And I don't know anything about hacking.

I sort of barely know anything about computers.

And when I do, it's kind of against my will.

I won't opine on this, but I certainly heard from listeners when we covered this on the Patreon that the sort of attack he did is not really super hacker territory.

It's called the DDoS attack.

So again, we've reached the sort of edge of my knowledge there with that, but nonetheless, he's a young guy that really got activated by this news story.

And I think, you know, one of the things I feel like is sort of a cautionary tale about this whole thing is that these.

inflammatory news coverage of these cases can really have an effect on the people that are listening to it.

And you don't know what that's going to do.

I mean, in some ways, this reminds me of like the Pizzagate scandal, right?

Where a guy showed up fully armed to a pizza place because he thought that Democratic operatives were like keeping children in the basement.

And, you know, that's someone showing up with a gun at a real place because of a fake story.

And obviously, this was not a fake story full sale, but obviously, you know, Marty had this idea that this hospital had kidnapped.

He was very much on that.

It was very much captivated by that narrative and then took this action because of that.

So yeah, he does have an interesting history.

He, you know, it was reported that he was a victim of abuse himself and also he was raised by his grandparents and his grandfather had been a victim of like institutional child abuse.

So you can see kind of in what he says in his own writings that he's very much a believer that, and of course, this is a thing that does happen.

And there have been some horrible stories around this.

Again, no evidences of this happening in hospitals in America and no evidence that this happened at Boston Children's Hospital in this case, but nonetheless, you know, he obviously brought that kind of framing to it.

So he becomes very convinced that it is his job to sort of rescue Justina Pelletier.

And so he does this cyber attack on the hospital where he basically like shuts down a bunch of functioning on their website.

It was during a fundraising period.

So it impacted, you know, in the hospital in their fundraising.

I don't think there were any reports of anything horrible happening to a patient, but nonetheless, it's serious to attack a children's hospital.

I don't want to overblow what he did, but I want to underscore that that kind of thing on a children's hospital.

You don't exactly know how it's going to affect the hospital.

So that is a dangerous thing to do.

And he could have put patients at risk.

I don't, I mean, he sort of says about it, oh, I knew it wasn't going to put patients at risk.

And I don't think that that's something that you could know going in, unless you were extremely familiar with how the hospital functioned, which there's no reason that he would be.

Exactly.

And I think it's just the fact that it's a children's hospital.

I mean, obviously, we know there have been some hacks where, you know, medical information has been stolen and, you know, things like that, where it's private medical information that's getting out out into the public because of a hack or something on the system.

And that's frightening.

And no matter how much you downplay kind of what he did, oh, I didn't do anything that gave away any information, or it just basically put a hold on things.

Like you said, you just don't know.

And this is, in general, I do believe in my heart, and I believe most people do that Boston Children's is taking care of children.

That's what they're doing.

And just like the Kowalski case, they attack hospitals and go after hospitals when realistically, I don't think it's what people think think they're doing, right?

What they're taking away, you know, from all children's in that case, by, you know, the amount that currently stands out there as far as how the trial came out, all you're doing is taking away their abilities to then take care of children in the future.

So it's an odd way to go, but I guess his, his jam is hacking, and that's what he did.

And he claims it was not overtly harmful.

It is an important thing to underscore.

And this isn't to say, you know, neither of us are saying that nothing bad has ever happened in a children's hospital.

We're not saying they're above accountability.

We're not saying we don't need to be vigilant about how hospitals and especially hospitals that we trust to take care of children are operating.

All of those things are very valid.

But I think we also need to remember that children's hospitals really occupy a special place in our communities and we do entrust them with children.

And these are non-profit corporations.

And again, does not mean they're above, you know, fiscal scrutiny.

But nonetheless, you know, these are the fact that he attacked them on a fundraising day.

I'm like, well, so, you know, the fundraising that goes to the hospital, and again, we were sort of talking about the economics of how a place like Johns Hopkins could be impacted by a quarter billion dollar verdict if it stands, or any of these other, you know, lawsuits now that are popping up that are really sort of copycat lawsuits of Justina Pelletier and the Kowalski case.

If the hospital gets a judgment, and obviously there are some cases where a hospital commits malpractice, they should pay out a family, right?

I'm not saying that should never happen, but who that is going to impact is the people that the hospital could take care of who can't afford insurance, who can't pay for certain things.

That impacts their ability to research if they're a research hospital.

I think on the whole, institutions that we should want to take money on.

I mean, this is not the same as like judgment happening against a gigantic bank and like those CEOs don't quite get the parachute they might or what have you.

It's like, I think we do need to remember what children's hospitals are and what they do in sort of a more general way.

Yeah, without going on too much of a Marty Gotsfeld rabbit hole, because because we certainly could.

Just to say sort of how things play out for him, I don't know to this day if he's ever met or talked to the Pelletiers, but he certainly sort of appointed himself the savior of Justina Pelletier and did this attack.

He got in big trouble for it.

There was a whole sort of sidebar about he tried to flee to Cuba with his poor long-suffering wife and doesn't sound like they were great sailors.

They ended up in Cuba.

Cuba sent them back, basically just put them back in the boat and refused their request for asylum.

So they get picked up by a Disney cruise ship and then brought back to Florida.

And then eventually he goes to prison for 10 years.

And it sounds like there was some controversy over the prosecutor and maybe these like overly tough sentences.

And that may all well be true.

However, you know, reading the details from this case in the Peacock documentary, talked to a couple of jurors.

I was just like, Marty, I don't want to sympathize with him too much, but it just like, I've never quite seen someone just overplay their hand quite like like Marty Gotzfeld.

So basically, he represents himself in court.

He goes to court and says, I'm not sorry.

And furthermore, I do it again.

And so I'm just like, not sure what a judge and jury are because it was a jury trial.

Like, I'm not sure what you're supposed to do with that.

Like, he obviously, like, he was not repentant.

He obviously learned no lesson.

He seemed determined not to learn.

He's, in fact, he seemed determined, in fact, to learn the wrong lesson from this whole thing.

So he went off to prison, and you can see that he really has some pretty serious delusions of grandeur.

He really painted himself as this hero and, like, I saved a child, so whatever I did is okay.

And furthermore, he number one, he clearly has a very shaky grasp of the facts on the ground because, for one thing, the facts were not out there yet.

I mean, a lot of what we are going to talk about, what happened to Justina Pelletier while she was in the hospital and how warranted I believe these concerns about abuse actually were and are.

He didn't know any of that at the time because nobody knew that at the time, because that was all behind the wall wall of HIPAA and DCF restrictions I'm talking about.

So that all came out because the Pelletiers sued Boston Children's Hospital.

So he could not have had a grasp on what happened.

He was not in the know again, not connected to the case.

So, you know, he maintains to this day that it was the right thing to do.

He spoke out a bit here and there from prison.

He had a blog on Huffington Post.

I first thought this was something that Huffington Post actually published.

No, I think this was this.

platform they had where you could just write a blog.

I read it.

It was absolute word salad.

I couldn't make heads or tails of it.

But nonetheless, he sort of of tangentially connected to this case.

During this time, there's his attack on the hospital, which it sounds like Anonymous was kind of like, oh, we don't know her when they

like, they did not really like get on board with this attack in any official way.

And Anonymous is a little tough to trace because they're anonymous.

So it's not like they're this sort of centralized, you know, organization, but there are other anonymous actions and attacks that have gotten like a ton of huge grounds full of support.

This was not one of the ones that did.

And in fact, some of the major social media accounts that are known to be associated with Anonymous actually denounced this attack while it was happening and was like, come on, guys, this is a children's hospital.

Please don't.

Nonetheless, Justina Pelletier did eventually get released from DCF custody and was returned to her family in June of 2014.

So basically, she was released from Boston Children's in January of 2014.

She was moved to like a different facility, I believe, that was in Connecticut, where her family was able to see her more.

And then eventually in June 2024, she came home.

And so Marty Gotzfeld, I I think, credits Marty Gotzfeld with making this happen.

It sounds like there was a tremendous amount of public pressure because the media attention on this case.

And so I suspect that probably had more to do with it than the one hacker.

But nonetheless, I think that's probably something he needs to believe.

Otherwise, why did he ruin his life and go to prison for 10 years?

So that is how this piece of the story wraps up.

And I think we will kind of get into in our in our next chat, sort of what came out when the family sued the hospital, which they did.

That was their basically next step.

There was a big news hullabaloo around Justina's homecoming.

There was this footage of her dad like carrying her through the door.

And we can kind of talk about what we know now about what went on in the hospital.

So, in the next episode, that will be my conversation with Bo Berman.

He is the reporter who broke the story.

And so, we will hear from him next about how this case came across his desk and what it was like to report on this case.

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