Nobody Should Believe Me - Case Files 02: Justina Pelletier Part 1
Episode Date: October 17, 2024Case Files is back with the first episode of a multi-part series on the Justina Pelletier case. Andrea and Dr. Bex covered this case in the subscriber feed, but, due to popular demand, decided to brin...g it to the main podcast. Justina Pelletier was a 14-year-old girl whose hospitalization at Boston Children's Hospital sparked a significant legal and media frenzy. Andrea and Dr. Bex’s discussion covers the medical background of Justina's condition, including mitochondrial disease and somatoform disorder, the treatment plans proposed by the hospital, and the escalating conflict between her family and medical professionals. *** Links/Resources: The Battle for Justina Pelletier: https://www.peacocktv.com/watch-online/tv/the-battle-for-justina-pelletier/5657866397468499112 Read about Justina Pelletier in The Boston Globe: https://www.bostonglobe.com/metro/2020/01/12/pelletier/0I2dQrYlZFJ9tNzscaXdAO/story.html Join Patreon for a look at Andrea and Dr. Bex’s previous coverage of the Justina Pelletier case: https://www.patreon.com/collection/507935 Preorder Andrea's new book The Mother Next Door: Medicine, Deception, and Munchausen by Proxy Click here to view our sponsors. Remember that using our codes helps advertisers know you’re listening and helps us keep making the show! Subscribe on YouTube where we have full episodes and lots of bonus content. Follow Andrea on Instagram for behind-the-scenes photos: @andreadunlop Buy Andrea's books here. To support the show, go to Patreon.com/NobodyShouldBelieveMe or subscribe on Apple Podcasts where you can get all episodes early and ad-free and access exclusive ethical true crime bonus content. For more information and resources on Munchausen by Proxy, please visit MunchausenSupport.com The American Professional Society on the Abuse of Children’s MBP Practice Guidelines can be downloaded here. Learn more about your ad choices. Visit megaphone.fm/adchoices
Transcript
Discussion (0)
True Story Media. And I'm diving into it with friend of the show, Dr. Bex. So Dr. Bex is a pediatric hospitalist from Florida.
Many of you will recognize her from previous episodes here on the main feed.
And she is also my co-host on Nobody Should Believe Me After Hours, which is our twice
monthly subscriber show.
You can find that on Apple Podcasts or on our Patreon.
On that show, we talk about how Munchausen by proxy is intersecting with the media and
popular culture.
And we also dig into MB-related topics and cases. So this month, we are unpacking the Ruby Frankie story, which is harrowing and very reminiscent of many of the stories that we
talk about here. Subscribing to the show is a great way to support us, and as always,
if monetary support is not an option for you right now, leaving us five stars on Apple or Spotify is
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Nobody Should Believe Me, please do share it with them. The tremendous support that we've received
from listeners is what helps me keep this show independent so that we can do the kind of bold
reporting that needs to be done on this topic. So with that, enjoy the show. Well, friends, it's 2025. It's here. This year is going to be, well, one thing it won't be is
boring. And that's about the only prediction I'm going to make right now. But one piece of news
that I am excited to share is that the wait for my new book, The Mother Next Door, is almost over. It is coming at you
on February 4th from St. Martin's Press. So soon! I co-authored this book with friend and beloved
contributor of this show, Detective Mike Weber, about three of the most impactful cases of his
career. Even if you are one of the OG-est of OG listeners to this show, I promise you are going to learn
so many new and shocking details about the three cases we cover.
We just go into so much more depth on these stories.
And you're also going to learn a ton about Mike's story.
Now, I know y'all love Detective Mike because he gets his very own fan mail here at Nobody
Should Believe Me.
And if you've ever wondered, how did Mike become the detective when it came to Munchausen
by proxy cases, you are going to learn all about his origin story in this book. And I know we've
got many audiobook listeners out there, so I'm very excited to share with you the audiobook is
read by me, Andrea Dunlop, your humble narrator of this very show. I really loved getting to read
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to learn more. Hello, Dr. Bax. 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 Munchausen 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. We started covering the case on the
podcast and really got involved in what was going on behind the scenes. That's what got me here
today. I've also been speaking in Florida and around the country to providers about medical
child abuse, child abuse by proxy, and 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 Bea 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 Casefile 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 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 the basic things you know about mitochondria are that they're this
kind of energy maker of the cell. The powerhouse of the cell. The 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 in 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 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 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 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
when you hear about this mitochondrial diseases or something that come up a lot in Munchausen
myoproxy 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 mitochondria? 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 Munchausen by proxy cases, is when there is kind of an evolving 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 tests, 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, it 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. Jerrion 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 Pelletiers 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 GI,
and because the main symptom was stomach pain, 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 symptoms 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 Pletiers 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 the 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 somatoform disorder. And often the word
somatoform 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, somatoform
disorder, is the doctor said it was all in her head. That's not quite what that means as a Vex.
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. 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?
I think that's where we lose people sometimes is, why wouldn't you keep digging for that
physical reason?
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 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 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. 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 somatoform disorder,
and they put together a treatment plan to basically demedicalize Justina Pelletier
and give her the treatment for somatoform disorder, which I believe is some
combination of, you know, 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 Kowalski 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 Kowalski 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 Kowalski case. Right. So not necessarily as 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 of 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 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 and 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
page 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 an imminent risk of
harm or death, as in they have no way to feed themselves or get hydration, especially in
Florida, or to get a medication that is lifesaving 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 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. Becks,
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 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 Kowalski 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 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 a 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 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's. Is that right? I think she had an NG tube at that time as well in her nose.
And then she also had a C-costomy 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 C-costomy tube as a way for children to stay 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. So it to use a diaper, wouldn't have risk of having
accidents or things at 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 psychostomy tube and 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 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 operated on and having scar tissue and all those
things. I want to tell you about a show I love, Truer Crime from Cilicia Stanton. My favorite
true crime shows are the ones where I feel like the creator has a real stake in what they're
talking about. And this is definitely the case with Cilicia, who got interested in covering crime
because, like many of us in this genre, she experienced it. In each episode of the show,
Cilicia brings a personal, deeply insightful lens
to the crime that she covers, whether it's a famous case like the Manson murders or Jonestown,
or a lesser known case that needs to be heard, like the story of a modern lynching.
She covers these stories with a fresh and thoughtful lens, helping listeners understand
not just the case itself, but why it matters to our understanding of the world.
Her long-awaited second season is
airing now, and the first season is ready to binge. So go check out Truer Crime with
Cilicia Stanton wherever you get your podcasts. If you've been listening to this show for a while,
you know that I have very strong feelings about what is and is not responsible true crime content.
Maybe you've heard me make some pointed comments about the
producers of a certain film, or perhaps you've heard one of my dozen or so rants about a certain
journalist whose name rhymes with Schmeichel. And if you've been with me for a while, you'll
also know that getting Nobody Should Believe Me on the air was quite the roller coaster. Podcasting
is just the Wild West, y'all. And these experiences are what led me to
launch my new network, True Story Media, where we are all about uplifting true crime creators,
doing the work, and making thoughtful survivor-centric shows. And I could not be more
thrilled to announce our very first creator partner, You Probably Think This Story's About
You. The first season of this enthralling show
from breakout creator Brittany Ard took podcasting by storm in 2024. Zooming to the number one spot
in the charts on Apple and Spotify as Brittany revealed the captivating story of a romantic
deception that upended her life and traced the roots of her own complicated personal history
that led her there. Brittany is back in 2025 with
brand new episodes, this time helping others tell their own stories of betrayal, heartache,
and resilience. If you love Nobody Should Believe Me, I think you will also love You Probably Think
This Story's About You for its themes of deception, complex family intrigue, and its raw, vulnerable
storytelling. You can binge the full first season
and listen to brand new episodes each week by following the show on Spotify, Apple,
or wherever you get your podcasts. You can also find it at the link in our show notes.
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 what 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 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, again, they showed video of her ice skating.
I mean, that's 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 blow up with the doctors at the hospital and the hospital ends up calling in what is in Massachusetts called the 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's 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, 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 Bader 5 psych ward,
which just 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 seen any evidence from this
case that anything sinister happened there. I just think Bader 5 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, Lou can
say basically whatever he wants at his own risk, obviously, 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 Pelletier 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 Maya Kowalski 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 Gottsfeld, who has no party to this case, he's not involved,
he's never met the Pelletieres, 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 Gottsfeld and then what he decided to do. So he is known to be a hacker or part of the group Anonymous, who has been 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 OpJustina, 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 to 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
pizza gate 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 at 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 evidence of this
happening in hospitals in America, and no evidence that this happened at Boston Children's Hospital
in this case. But nonetheless, 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 the
cyber attack on the hospital where he basically 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. 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, he sort of says about, oh, I knew I 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, you know,
getting 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 they're doing, right? What they're taking away from all children's in that case by 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 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 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
nonprofit 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 the fundraising that goes to 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 lawsuits now that are popping up that are
really sort of copycat lawsuits of Justina Pelletier and the Kowalski case, if a 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 out, 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 Gottsfeld rabbit hole, because we certainly could, just to say sort of a more general way. Yeah, without going on too much of a Marty Gottsfeld rabbit hole,
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
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 Marty Gottsfeld. 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. 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, he 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 of HIPAA and DCF restrictions I'm talking about.
So that all came out because the Pelletier 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 was absolute word salad. I couldn't
make heads or tails of it. But nonetheless, he sort 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 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
organization, but there are other anonymous actions and attacks that have gotten like a ton
of huge groundswell 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
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 Gottsfeld, I think,
credits Marty Gottsfeld 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 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 Beau 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. If you've been listening to this show for a while, you know that I have very strong feelings about
what is and is not responsible true crime content. Maybe you've heard me make some pointed
comments about the producers of a certain film, or perhaps you've heard one of my dozen or so
rants about a certain journalist whose name rhymes with Schmeichel. And if you've been with me for a
while, you'll also know that getting Nobody Should Believe Me on the air was quite the roller coaster.
Podcasting is just the Wild west, y'all.
And these experiences are what led me to launch my new network, True Story Media, where we are
all about uplifting true crime creators doing the work and making thoughtful survivor-centric shows.
And I could not be more thrilled to announce our very first creator partner,
You Probably Think This Story's about you. The first season
of this enthralling show from breakout creator Brittany Ard took podcasting by storm in 2024,
zooming to the number one spot in the charts on Apple and Spotify as Brittany revealed the
captivating story of a romantic deception that upended her life and traced the roots of her own
complicated personal history that led her there.
Brittany is back in 2025 with brand new episodes, this time helping others tell their own stories
of betrayal, heartache, and resilience. If you love Nobody Should Believe Me, I think you will
also love You Probably Think This Story's About You for its themes of deception, complex family
intrigue, and its raw, vulnerable storytelling. You can binge the
full first season and listen to brand new episodes each week by following the show on Spotify, Apple,
or wherever you get your podcasts. You can also find it at the link in our show notes.