Case Files 03: Justina Pelletier Part 2 with Beau Berman

True Story Media.

Hello, it's Andrea Dunlop, and this is Nobody Should Believe Me case files.

Today, we are continuing our conversation about the Justina Pelletier case.

So, if you haven't listened to the previous episode where I break the case down with Dr.

Becks, I encourage you to listen to that first, though we do briefly recap the case at the top of today's episode.

Today, I get a chance to talk to Bo Berman, the reporter who broke this story, about his coverage of the case and his time with the Pelletiers.

I spend a great deal of time every day, pretty much, thinking about how Munchausen by proxy is covered in the media.

So I was so grateful to Bo for coming on to talk to us about his experience covering one of the most high-profile cases.

And what he has to say is fascinating.

And thank you for all of the amazing feedback you've sent us on our in-between seasons format.

We are working diligently on season five.

And let me tell you, it is a doozy.

I am so happy to be here with you each week while that is coming together.

Let us know if there is anything you want us to tackle here on Case Files by shooting us an email at hello at nobodyshouldbelieveme.com.

You can find even more by subscribing on Apple Podcasts or joining our Patreon.

We also have a free tier of Patreon where you can listen to select bonus episodes.

And for the meantime, I am going to make all of our previous coverage of the Pelletier case free over there.

So if you want to come down the rabbit hole with us, that is where you can do that.

As always, if monetary support is not an option, please leave us five stars on Apple or Spotify or share the show with a friend.

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Now, here's part one of my conversation with Bo Berman.

If you just can't get enough of me in your ears, first of all, thank you.

I have a job because of you.

And secondly, did you know that I have a new audiobook out this year?

The Mother Next Door, which I co-authored with Detective Mike Weber, is available in all formats wherever books are sold.

It's a deep dive into three of Mike's most impactful Munchausen by proxy cases, and I think you'll love it.

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Well, thank you so much for being with us, Bo.

And I'd love to start off if you could just tell us who you are and what you do.

And so I guess in this case, what you did in the past in relation to this case.

Thanks for having me on the podcast.

So my name is Bo Berman.

I spent 11 years as a television news reporter working for CBS affiliate in Texas and a Fox affiliate in Connecticut and an ABC affiliate in Pennsylvania.

So I was sort of a hybrid.

I was like what they would call a general assignment reporter working on your day-to-day stories, but then also an investigative reporter and spent a number of years, you know, working on investigative reports, some in Texas that led to the changing or creation of a new state law to make things safer.

And then in Connecticut in 2013 is whenever I was the first reporter, I guess, in the world to break the story of Justina Pelletier and her situation with the Boston Children's Hospital.

and everything that followed with that.

So I had an 11-year career as a journalist and I'm no longer doing that, but might again in the future.

But yeah, so that's kind of my quick backstory.

Yeah, fantastic.

And so I realize this is an extraordinarily complex case, but could you give us just a brief overview of the Justina Pelletier situation and specifically how it came to your attention?

So Justina Pelletier was a teenage girl living in a town called West Hartford, Connecticut.

And it is an extremely complicated case, But I guess in a nutshell, she had faced health issues for a long time since she, basically since birth.

I mean, her parents had sought treatment on her behalf, you know, with various doctors.

And then when she was 13 or 14, I think 14, some of her more severe stomach and health issues cropped up again.

And they sought care for her out of state in Massachusetts where she had seen a specialist before.

And she was admitted to Boston Children's Hospital, where, you know, one one of her specialists had transferred to.

And before she was able to see that specialist, a team of other doctors saw her, examined her, and determined that they thought the course of action the prior specialists were taking was wrong.

And basically diagnosed her with somatoform disorder, which, in a nutshell, was saying that the health conditions that her parents thought she was facing and that she thought she was facing were more so of the mental variety, and there was a possibility of Munchausen by proxy.

And they basically created a new care plan for her.

And the parents fought this.

Justina didn't like this.

And the hospital contacted the Department of Children and Families who swooped in and within a few days took custody of her, got an emergency custody order from a judge.

The judge was sort of evaluating, okay, I have these parents who are acting crazy and

losing control of their emotions versus a Harvard-affiliated hospital.

I'm going to trust the hospital on first blush.

And you know, the parents lost custody of Justina.

And I think in most cases, someone might assume, okay, that might have lasted for a few days or a few weeks or maybe a month, but it ended up turning into a 15-month saga that captured national media attention.

And I firmly believe that if it happened in 2024, it would have been splashed across front pages of newspapers and all over cable news.

given that it was like 2013 and Twitter and social media wasn't as big, it didn't quite get as much coverage as I honestly expect it would have gotten now with TikTok and everything.

But that being said, it still did get a lot of coverage, you know, People magazine and the Dr.

Phil show and things of that nature.

And so, yeah, I first heard about the story in kind of a weird way.

You know, I was a news reporter at the Fox TV affiliate in Hartford, Connecticut, and had been there for about two years and had developed like a little bit of a friendship with one of the meteorologists at the station.

And we would go out and grab a beer sometimes or a coffee or whatever.

And he walked up to my desk one day because he didn't sit far away and said, hey, you know, I have kids.

And the teenager who is our babysitter said that her sister is like stuck in a hospital or something.

It's really strange and it just seems like it might be a good story for you.

I know it sounds kind of crazy.

I don't care what you do with it, but she's just really emotionally distressed about her sister's situation.

And she gave me her mom's phone number.

And I just thought, you know, if you're up for it, you might give them a call and look into it.

It may end up being nothing.

It might just be too weird for us to cover, but I thought you should look into it.

So I think I waited a few days and then I eventually called Linda Pelletier, Justina's mother.

And I still have my notebook from that day in August of 2013 where I took the initial notes of this call.

And that's how I found out about it.

And so I scheduled an interview for like a few days later.

I think it was a Friday with the family.

And I went to their home in West Hartford with a news photographer.

And, you know, that was where I first learned about the whole situation.

And it blew my mind.

It just really blew my mind.

I just couldn't believe what was happening.

It seemed almost fabricated, but it wasn't.

And I just, you know, very quickly was extremely intrigued and knew that this story had to get out to the public because I knew right away that, you know, the world would be as intrigued as I would if they knew about this because it was just so hard to believe from almost every angle.

And it was very unclear who was in the right and who was in the wrong.

Well, I mean, my first instinct as a human being was to feel sorry for the teenager, the child in this situation.

You know, secondary to that, my job, my livelihood was to find, produce, create, publish fascinating, interesting stories that deserve to be told and settled or figured out by the officials, you know, public officials.

And I sort of just thought that if the parents were lying or bad people, you know, bad guys, then I was basically getting an exclusive interview with a criminal family, which would be a crazy news story.

And I thought a much bigger story would be if they were completely telling the truth and the good guys, then you had a vast, you know, sort of strange

tangled conspiracy with Harvard-affiliated hospital and the state and, you know, a lot of government officials.

And I just knew that either way, this, this was something that had to be told.

And we can get into which side of that you may have eventually landed on.

But yeah, I mean, so obviously your instincts were right.

And I agree with you that I think that if this happened in the in today's landscape, it would be a bigger story.

And in fact, I don't know if you followed this story at all, but with the Mike Walski story, in fact, we did see it blow up in a much sort of shorter timeline and a pretty big way.

And I think social media was a part of that.

It sounds like your instincts were really telling you this was going to be a big story.

Were you surprised at all at how this blew up and sort of how fast it became a national story?

Or did you kind of know that this was going to be a big deal?

So yes and no.

Like I'm bad at many things in life, but one thing I'm good at is investigative journalism and having an instinct and a hunch for when a story is going to blow up.

And I just knew it.

And I had to fight and fight and fight to even cover this story because there was a legal side to it.

I mean, I was based, you know, received a phone call from the hospital, Boston Children Hospital spokesperson saying, well, you should stay away from this.

I don't think your TV station wants to deal with the repercussions of your possible misleading reporting.

He's basically said something to that extent, almost threatening a lawsuit, essentially.

And my bosses, you know, were wary of it.

You know, I was like 26 years old at the time or 27 and kind of junior sort of, even though I had had a lot of success and i was relatively new to the tv station and so they had to place a lot of trust in me that you know my vetting process of the parents and all the facts and the paperwork was legitimate and you know a lot of times for a tv station especially a struggling one because we were not like the number one rated station It's kind of easier to coast a little bit and not take on things that could involve you in a lawsuit or, you know, put you at risk.

And so I got a lot of pushback.

And so the story almost never aired.

And in fact, some other competing stations had learned about it first, actually.

And I learned that from the parents, but they didn't run the story because it was too complicated.

It was a lot of work.

It was happening out of state.

So it required countless trips to Boston from Connecticut, which is not far, but it just still presents a logistical challenge.

But I just knew it.

I just knew based on what I saw that this was going to captivate anyone who learned about it because it had every element that.

a big story has.

You know, it had emotion, it had the life and death consequences.

It involved parental rights.

It involved the government, possible government overreach.

And these are things that people have very strong opinions about and get fired up about.

But I still was surprised, though, like how fast it went.

And again, I mean, if it happened now, oh my goodness, it would have gone so much faster.

But even back then, it did, it was trending on Twitter at one point, which to me was a big deal because I kind of like lived on Twitter.

And Free Justin was a trending hashtag nationwide.

The fact that they were on like Fox News National being interviewed by Megan Kelly within weeks after the story that I did, you know, aired was really surreal to me.

And then when they were on the Dr.

Phil show, you know, come March, it was really surreal.

But by then, the whole thing, I thought it was going to keep getting bigger and bigger and it eventually kind of cooled off a little bit.

But yeah, it was one of those things where you're thinking, like.

How does the world not know about this?

Like, how is somebody not stepping in and doing more to figure this out, get to the bottom of this?

Yeah, I mean, and I understand, like, I being a person that reports on these cases, and you're right, these stories do do have all of these incredibly captivating elements for all the reasons that you said.

And the media can be extremely reticent in reporting on them, sort of for better or worse, I guess.

One of the biggest challenges reporting on these stories before they go to something like a trial, right?

Where that rarely happens in Munchausen cases, obviously, this was the family suing the hospital, but is that you really can't get very much medical information except for what the family is giving you.

I mean, so did that give you pause when you were going into this?

That, like, frequently in these stories and in some of your reporting, the phrasing is, well, the hospital didn't comment or the hospital refused to comment.

And of course, like the hospital can't comment, right, because of HIPAA.

I mean, there's only so much information they can give you.

And so, you know, what ends up happening in so much coverage of these cases, and there has been a lot of coverage in the last couple of years from people like Mike Hicksenbog about sort of, quote, false accusations or stories that are presented as such.

And the only thing the hospital says is the PRE, sort of, we did do the best for our patients kind of statement.

Again, what you said, you know, there's a story of parents losing custody of their children, especially if that's a sick child, that's inherently just emotionally explosive, right?

And so to sort of have that and then have this sort of void on the other side, I mean, were you concerned about that going in at all?

For sure.

I think it's a fantastic question.

So there's this inherent imbalance that's going to happen in a story like that that is basically out of your control.

So for me as a journalist, that would never be a reason not to cover something.

That is the prerogative of the hospital.

And it's on them, you know, to figure out a way to convey their side of the story without jeopardizing a potential legal case or saying the wrong thing or violating HIPAA.

And HIPAA is extremely important.

I'm glad the government, the country has that law.

That being said, in my 11-year career as a journalist, I saw people claim HIPAA reasons for not saying things many, many, many times, more than I can count.

And many of those times they were not applying the rule correctly, the law correctly.

They were saying, I mean, there's no way we can comment because of HIPAA.

And then the next day, there would be a motorcycle crash of someone, you know, like a prominent figure.

This is just an example.

They would provide details.

And it's like, well, in that case, it was not applied correctly across the board.

And so I guess what I'm saying is it was used as a blanket excuse to not give information, even in situations where they legally absolutely could have given information.

Now, I'm not saying that was the case here, but it definitely gave my TV station, my employer, some pause.

And I speak to a journalism and communications class at Cornell University each fall and each spring.

I know a professor, and he invites me in as a former journalist to speak to the class about the complexities and, you know, just behind the scenes look at.

careers and communications and journalism.

And so I usually discuss the Justina Pelletier case.

And I get that question from students a lot after they watch the first story on it.

They say, well, it seems a little like almost biased.

Like, you know, why did the hospital not say anything?

And, but you have all this, you know, video interviews with the parents where they're crying and it just feels a little imbalanced.

Like, how did you navigate that?

And again, the answer is, as a journalist, there's not much you can do, but

what you can do is reach out to the other side as many times as possible, you know, with advance notice, give them months to figure out a response or decide to respond or not respond, which I did.

And the other thing you can do is seek like third parties to comment about the overall broad situation, which we did in this case.

So the very first report we did on this, we went to Mass General Hospital, and this was before the story had ever been published.

It hadn't blown up yet.

And so they were willing at that point to comment on just generally speaking, you know, mitochondrial disease and custody battles and the sort of vague and gray area nature of this type of diagnosis, Munchausen by proxy.

And therefore, you have at least like the perspective of a doctor, of a hospital to inject into this so that it's not just the family versus a silent hospital.

That being said, it's a fantastic question.

And yeah, I mean, you put yourself at risk of looking a little bit biased, even though you are not actually biased.

And you want nothing more than both sides of the story.

I will tell you that from my perspective, and I have had some doctors really bravely come on and talk to me in as much detail as they possibly can about a case.

I think most hospitals, and especially being big institutions that deal with really sensitive things and rely on fundraising, I mean, there's all kinds of reasons that they would be very reticent to talk to the media, especially about a specific family, a specific case, you know, that kind of thing.

And I think that's all really warranted.

And, you know, given the media climate around this sort of medical kidnapping narrative, I think it would probably behoove them, or at least some of these organizations like American Academy of Pediatrics or like, you know, some of these bigger, to really give some deeper commentary on this and specifically address it, even without revealing specifics about a case.

And so, you know, hospitals are part of the community and they have a relationship with the community.

So I think some communication from them is when there's a concern in the community is really warranted.

So I think that's a really good point as well.

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So you reported on this case for quite a long time, you know, and then obviously you were one of the voices in the Peacock documentary about this case,

which I found to be actually pretty well balanced.

And obviously that was after the trial, right?

So I wonder kind of for you, you're going into this case and you're thinking, well, like whoever's right in this case, it's a huge story.

And I wonder like, how did your sort of looking back on this whole time, like, how did your understanding of what was happening in this case evolve over that time, especially as we went through trial and you did hear all of those doctors give a lot of details because that is the one area where then you're going to hear a lot of the details is if people are on the stand, right?

HIPAA doesn't apply in that case.

I have a few things to say about this.

Early on, my only like personal concern, again, was for the health and the safety of the child, right, at stake in the case.

And it sounds like cold or something.

You know, as a journalist, like I don't have a dog in the fight, right?

So I'm just trying to get to the truth.

That's my angle.

And people often ask you that, well, what's your angle?

And I do think some journalists like have an angle on things, right?

Of course.

I know better now.

I was a little naive, you know, 12 years ago, I would really defend all journalists at all times.

And since then, I've learned that not all are acting in good faith.

I felt that whatever the truth was would, you know, quote, set you free, like what would either help Justina or either way, it would help her.

So if the truth was that her parents were abusing her, that would help her if it got out.

If the truth was that the hospital was crazy and had ulterior motives, that would help her.

But in terms of like the evolution of my opinion on it, I talk about this like in my off time with family members or friends or something like that.

And I didn't know what to think.

I mean, I had never covered a story in my life where I had less of a gut instinct of who was right and who was wrong.

And it would switch like on an almost daily basis.

I would, you know, think like, oh, these parents are crazy.

Like, this is so sad, what they're doing to her.

I wouldn't report that, but I would be thinking that privately.

And I really wouldn't let that bleed into the coverage.

But like, you know, in my home life, I would be thinking, wow, this is crazy.

And then the next day I would see something else that would make me think, oh my God, you know, this is the hospital doing this.

I can't believe this.

You know, I had dozens of voicemails from people nationwide telling me, oh, you need to hear my story.

I'm in Phoenix, Arizona, and I have a situation just like this.

Or I went through this five years ago with my cousin or my daughter or my son.

You know, the fact that I was interviewing attorneys in New England, in the Boston area, who were saying, no, no, no, no, this is not the only case.

That's what you need to understand, Bo.

This is not the only case.

Like this has happened before, manifesting a slightly different way, but this is not the only time this has happened involving this hospital.

I didn't know what to make of it, right?

And luckily, as a journalist, I kind of had the privilege of being able to just put things out there and kind of seeing what happened, you know, as long as they were accurate.

And you're right, I did cover this for a long time.

I had never covered any story this long ever before.

I haven't since then.

I covered it for like nine or 10 months, you know, on an almost like on a weekly basis, if not daily.

So I did know it inside and out.

You know, I had like a really good line to the family, almost too close to the family to the point where people thought I was like in cahoots with them or something, which I absolutely, you know, I wasn't, but they just trusted me a lot.

You know, I think I treated them fairly and was someone who listened to them with open eyes, heart, whatever you want to call it.

And so they would call me a lot and tell me things that.

They probably weren't even supposed to.

And I didn't report on all of it because I just, we just couldn't.

But to the question of, you know, how did it evolve, my feelings on it, of who was right, who was wrong.

I stopped covering it in 2014 because I, you know, after she came home, the story kind of died down at that point.

We did a few follow-ups of, you know, six months later, how is she doing?

Or how is the family feeling?

We covered her birthday party and her sort of welcome home party.

But then I moved out of state into a different TV station and the story was irrelevant at my new station, which was local news in a different state.

So I stopped covering it.

I tried to follow the story in my personal life.

So I wasn't there for the trial.

I didn't cover the trial.

You know, and that came years later.

I started working on a book about it, which I have never published.

You know, I'm still in the process of that and would love to, but just haven't been able to.

But anyway, so watching the documentary actually, where they got into the trial was really my first like in-depth glimpse at what came out in the trial or the final stuff at least.

And I didn't know what to make of it.

I mean, the way that the documentary painted it, you know, based on the testimony.

uh did not look great for the parents i think you know at the end it really didn't that being said just knowing what I know, what I covered for all those months, I still am not ready to say who is correct definitively.

It's still just too murky for me.

So I still would not say, okay, the parents are guilty.

You know, I mean, they haven't been charged, right?

They've never been charged with any crime to my knowledge.

No, they haven't.

But yeah, I mean, it didn't make them look good at the end.

I'll say that much.

Yeah.

I mean, did you have any familiarity with munchausen by proxy medical child abuse going into your reporting on this case?

No, I didn't.

I did not.

I'd heard of it.

I've heard the term, right?

But like very limited.

So no, I had never like directly covered this before.

So I did a lot of research.

And but yeah, no, I was not experienced in this matter.

You covered this intensely during a specific period of time and then the trial happened long after.

I've read like the Boston Globe's reporting on this.

I didn't do a full sort of primary source deep dive, mostly because I couldn't find that much.

It's harder to get these records from Boston.

Was there anything in particular that, you know, from the hospital's testimony or from like that side that was presented during the trial that really like shocked you?

You know, I'm a little foggy on it.

I apologize because I haven't watched the documentary since it came out, which was like December 2022.

I think that the expert that the hospital side, that the guy they brought in, was it from Canada?

It was like one of the last people who testified was the most like damning thing towards the pelletiers, meaning the parents, you know, side of the story.

I don't remember the exact details, but I just remember some of that testimony myself thinking, I hadn't heard that before.

Right, where he went down basically like all of the different tests that you do for mitochondrial disorders, which is sort of a broader category than it's often presented.

But, you know, the muscle biopsy test and the this and sort of went down this whole list of things and that Justina Pelletier had tested negative for all of those.

And that was an incredibly compelling piece of testimony to watch.

Yeah, it really was.

And the parents always had sort of like a counterpoint to a lot of this stuff.

And so they were like, well, we did do a muscle biopsy on Jessica, you know, the sister, Justina's Justina's older sister, one of her older sisters, and she did have evidence of mitochondrial disease is what they had told me, you know, and what the paperwork showing.

But again, that's not the same as doing it on the patient in question.

I thought that was really compelling testimony.

Again, it wasn't enough for me to fully 100% full stop say, okay, you know, all these years later, the parents were 100% wrong.

The hospital was 100% right.

It just wasn't quite enough.

That being said, it did, you know, kind of tilt me more towards that direction of thinking this is really questionable now for the parents, you know, maybe more than ever before.

Had me questioning their side of the story.

I'm not saying all of these things to sort of try and convince you one way or the other, but mitochondrial disorders come up a lot in Munch Housing cases.

And of course, as you mentioned, you are hearing from other people saying, oh my gosh, the same things happened to us.

I have a little bit of a different opinion on what that relationship is.

And we can talk a little bit about mitoaction.org.

I know you interviewed a couple of protesters that were associated with that group.

I've done a little digging into that group.

You know, where people say, oh, all of these parents whose children have mitochondrial disorders are being investigated.

I think the relationship goes the opposite way, which is that I think this is something that unfortunately is exploited by a lot of offenders.

And it's because it's one of those things, you know, I'm not a doctor, but I have a, you know, talked to a lot of them and did talk to a doctor about mito.

And one of those things where, again, it's like a spectrum of disorders that's related to the mitochondria, the powerhouse of the cell, the only thing any of us remember from biology class, or at least in my case,

you know, that can sort of affect anything, right?

It can affect any symptom.

But from my understanding of it, I mean, number one,

they're relatively rare.

And it isn't something where it would be mild until someone's 15 and then suddenly become extremely severe, which is, of course, what the Pelletiers, the...

presentation of it that they they presented with Justina.

It also really caught my attention in the documentary when they pointed to the expert expertise of Dr.

Bowles, who was the person who did the genetic sequencing that said that Justina Pelletier had extremely rare form complex mitochondrial disorder.

Dr.

Bowles is extraordinarily notorious in the Munchausen community because he shows up as an expert witness all the time.

And it is my opinion on him that he is one of these doctors, which unfortunately there are a small handful of them that will give this diagnosis to just about any parent who's pursuing it.

There is so much context.

You know, for me, certainly, like, I don't refer to myself as a journalist.

I think I do a lot of journalistic work and I certainly do a ton of research and have my facts straight because I also cover a lot of litigious people.

So that would be not behoove me to do otherwise.

But of course, I do have a very close connection to this and it is an area I do sort of have a dog in the fight for lack of a better term.

I wonder also just, you know, you spent so much time with this family.

And as you said, you were sort of one of their most trusted sources.

I mean, just what was your impression of them?

You talked a little bit about this in the documentary.

It sounded like it was a pretty intense environment.

And now, granted, like you obviously are meeting these people at an extremely stressful juncture in their life.

So giving some grace to that.

But I mean, what were the Pelletiers like?

Yeah, I can get into that.

I just want to just for a second revisit what we were just talking about.

I don't remember the part about Dr.

Bowles.

I mean, that certainly sounds questionable if that was the person who, you know, was doing the genetic sequencing.

I think part of what made me for so long give the family a lot of grace, let's say, you know, to borrow your word, is that it was a doctor from Tufts University Medical Center who diagnosed her, you know, Dr.

Mark Corson, who I talked to on the phone, but he was adamant that the call remain off the record.

So I still have my notebook, my written notes from a call with him.

And, you know, he was very convincing talking with him.

And Tufts is like a very, very reputable institution.

That was what really for so long gave a lot of credence to their side of the story is like, she does have a diagnosis from Tufts.

You know, and I've seen the paperwork.

Yeah.

I mean, it's not really my place, you know, be it then or now to give a judgment on this just because it's just not my place.

You know, I'm not the judge.

I'm not the jury.

I am a journalist.

Now, again, if I find, you know, 100% compelling evidence, you know, that says it one way or the other, then it's also not my job to like play it neutral, right?

Like false both sides-ism situation.

But again, I haven't covered it, you know, directly for many, many years.

I don't feel that it's appropriate for me to say, you know, so-and-so is guilty or this is the definitive judgment.

The other thing I just wanted to say was, you know, in my opinion, the parents sort of actually didn't.

I think like the way you characterize it as them saying that it kind of flared up or suddenly got worse when she was 14 or 15 was not entirely accurate because, and this actually maybe doesn't make make them look good at all, but they were having operations done on her throughout her life, you know, where she, I forget what it was called, she had a port into her stomach, you know, and that was the thing where I always went back to, if they were wrong and this was all being done in vain for no reason, then that was like 100% medical child abuse of like one of the worst varieties of her being physically cut open surgically for something that was unnecessary would be heart-wrenching and like disgusting behavior.

These are the things that were in my mind of like, on one side, Tufts University doctor who I spoke with personally, who was very convincing, diagnosed her with mitochondrial disease disorder.

And then on the other hand, if he was wrong, then she's being cut open surgically for no reason.

So that's what I was weighing, you know, without being an expert in medicine, with never having covered munchausen by proxy ever before.

I'll get back to your question.

So the first time that I met the family and subsequently, it again was really hard to balance because you're meeting someone, which is on like the worst day of their life, basically, or the worst year of their life.

And so it's hard for me to say how I would be acting.

I have a daughter now, which I didn't then.

And if she was taken away from me and I was convinced that I was doing the right thing, I would probably be acting pretty, pretty outlandish, you know, pretty, pretty crazy.

I might be yelling.

I might be with my temper.

And that's how they were.

So I was in their living room, and the parents were kind of snapping at each other a little bit.

And you could tell everybody was on edge.

That being said, they were also like, or at least least the dad, Lou Pelletier, was like kind of lighthearted, though, like strangely at the same time and like cracking jokes and like talking about his muscles and his football days and this and that.

It just struck me as like a very odd family.

Although I had known families like kind of sort of like this growing up where it's just the way they are.

The upstairs of the house was very organized and like clean and neat, but the downstairs like really smelled like dogs and there were like ice skates everywhere and it was like pretty disheveled.

But it just, it struck me as just like a family.

Like it was like four daughters and it was just like that's kind of life how it is and you know they've been living on the road like traveling to Boston every three days for like all these months by the time I met them like six months or something it all sort of like fit like oh this is plausible of like they're a normal family but that being said like I did think they were strange after meeting them I walked out thinking okay they're probably guilty of whatever they're being accused of because they're acting so crazy you know they're just so weird that being said they were always very nice like so if they hear this I feel bad they're hearing me call them weird They were also very nice.

You know, they were nice people.

They were kind to me.

They would always offer me a drink or, you know, a glass of water and say, sit down, make yourself comfortable.

The part that was a little strange was like their lack of boundaries.

They would call me late at night anytime, you know, in the early in the morning and treat me as if I was their confidant or even their attorney.

And I was not, you know, that.

And I would tell them that point blank, you know, I need to remind you that I am a neutral party.

I would just say I'm not a friend.

I'm not an enemy.

I am a neutral party here.

I'm a journalist.

And I would advise you not to maybe confide things in me that you don't want to be reported because anything you say is on the record unless you say off the record to me explicitly.

And I was just surprised that sometimes they would sort of violate a lot of like what to me seemed like common sense norms and boundaries, mostly in their communications with me, but never really amounted to anything because I was ethical and didn't really use things against them or for them, but it was just surprising.

And I left the first meeting with them thinking, whatever it is they might be accused of, they're probably guilty because they're so, they just seemed unhinged.

As I reviewed paperwork, I saw another side to it.

And as I conducted more interviews, no, I wasn't, I was never like fully convinced where I said, okay, they're exonerated.

This is over.

I love them.

They're perfect.

But it was never that.

But it was like enough evidence on both sides that I was like, I just don't feel comfortable personally making any sort of judgment.

Not even that that's my job anyway, but like I just was never convinced.

And I totally understand your point, which is that just because there's other people saying, oh, this happened to me, this happened to me, it doesn't prove anything.

That doesn't mean that like, oh, this is a conspiracy or the hospital is always wrong.

It might just be that offenders gravitate towards using this disease as sort of like their excuse or their crutch or their fallback or whatever.

I totally get that.

That's not lost on me.

And that also, you know, certainly crossed my mind as I was covering this that, you know,

there can be two reasons for a cluster of something and maybe it was the bad reason, right?

That's my commentary on it.

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Well, I'm so glad you brought up Dr.

Mark Corson because that was one of the things while I was watching this that really gave me pause as well, right?

Because I think one reason that these cases, whether they're being played out in a civil suit like this or whether it's in family court or in a a criminal context, you know, with a medical child abuse accusation, is that judges can often see these as like doctor versus doctor, right?

So I always find it's really important to sort of talk about like, which doctor?

What are their credentials?

And so, yeah, you're right.

I mean, Dr.

Mark Corson is a much more convincing figure than someone like Dr.

Bowles, who I believe Dr.

Bowles, they just brought in as like an expert witness.

I don't know that he was ever part of Justina's care team.

But yeah, the Dr.

Corsen thing was so interesting.

And then there was that whole sort of back and forth over whether Justina could go see Dr.

Corson or, and then it sounded like Dr.

Corson maybe was actually pretty reticent to get involved after it became a shelter case, which I completely understand and is a very sensible thing probably of him to have done.

But yeah, I agree with you that that previous diagnosis from Tufts did certainly add some complexities to it.

And I don't think, you know, something I always try and watch out for myself.

I mean, this certainly has innumerable red flags for Munchausen by proxy.

Now, I can't say for short, right?

I don't have like the necessary information to be able to do that.

And to your point also with like, you're right that she had had a long history of health issues, including some very serious surgeries that preceded her admission to Boston Children's.

I think what I was sort of more responding to, which is not on you at all or on them at all, is sort of like what you saw a lot of, I think, in the presentation of this case or the way it was covered across various media outlets was the image of Justina Pelletier ice skating and then juxtaposed with the image of Justina Pelletier in horrific pain.

And I think like that to me is very striking because of what mitochondrial disorders, when they are very severe, you wouldn't see someone.

ice skating one day and then completely debilitated shortly after within the span of a year or a couple of years.

So

yeah, that's, that's kind of more what I was getting at.

Yeah, I totally hear you on that and understand.

That was probably my fault, actually.

I could take responsibility for that.

Just because, and what I mean by that is that, you know, my original cut on this story, like the first report on this was nine minutes long.

And you saw that Peacock did like four 40-minute, if not an hour-long episodes.

So that's like four hours of programming to explain this.

I was trying to explain the whole thing.

Granted, it was a little earlier in the timeline, but I was trying to explain the whole thing in nine minutes versus four hours.

And my bosses said, this cannot be longer than four minutes.

So I cut five minutes out of it.

And what happens happens when you do that is you're cutting some corners.

And my goal in showing like the ice skating, and also the medium that I work in was so visual that I needed to be able to like communicate something without writing it all out in 10 pages of, you know, newsprint or something.

So I think like the goal in showing the ice skating clip was just that like there were instances in her before where she was like at least healthy enough to do some things.

And then, you know, the video from the hospital of the wheelchair and her hairs falling out, you know, it was reality that that, but she she looked at it.

But the question was always like, but like, when did that switch happen?

And like, how healthy was she really?

And I do agree with you that, like, the way that was presented made it look a little bit like this was the before times.

This is the after times.

Thanks a lot, Boston Children's Hospital, for ruining our daughter's complete life.

It was like slightly misleading, just because, but the reality was that, like, if you sat down and talked to the parents, they would be like, oh, no, no, no.

Like, the ice skating thing was something that like was a small part of her life, but sometimes she couldn't do it.

She missed, missed you know dozens of meets and competitions and practices because of her health issues so it was like a glimpse into like what she could do sometimes but i didn't have time to explain all that in a four minute story so and that's partially my fault and partially the fault of the media industry and part you know so it's like that's a much bigger like question but i'm glad you brought that up because i'd be the first one to admit that like that can you know paint a little bit of the wrong picture.

So it was not to say that she was in perfect health before the hospital, but it was to say that like there were glimpses of health or there were moments of a better life, so to speak.

But there were also plenty of moments that they fully admitted where she had been in a wheelchair at times before that, but it wasn't always, which I understand sounds weird and sounded weird to me too.

But I don't know how that disease works.

I don't really know how any disease works, right?

Cause I'm not a doctor or a physician.

So, you know, it's complicated.

And I mean, I understand the limitations of especially something like, you know, nightly TV news report.

You can't necessarily get in every nuance that you would like to.

My sort of response to that, and I think also the sort of the collective picture that the Pelletiers have painted and continue to paint of Justina's sort of variability and health, and this is something that comes up a lot in these cases where they have simultaneously the most severe.

version of this disorder.

It's also the most rare that doesn't show up on any of the usual tests.

And it also can be the most variable.

So you have on this day they're ice skating and on this day they're hospitalized and then they're both in a wheelchair and they can ride a horse and it's a constellation of symptoms that doesn't make any medical sense with mitochondrial disorder or really like anything else.

And so it's not that, you know, these things don't exist and there are medical mysteries and their mitochondrial disorders are something that are being studied a lot.

And how does the mitochondria affect, given that they're in every cell, how might they be related to this, that, and the other thing?

But sort of the presentation that they're giving doesn't fit any known, you know, information about mitochondrial disorders.

It's unbelievably complex.

You You know, did you, so you interviewed some protesters outside of the courthouse while you were doing your reporting.

And what was that scene like?

And what were your impressions of talking to those folks, some of whom were other parents who said they'd had similar situations with their children who also had mito or other rare diseases?

You mentioned hearing from a lot of parents, but what was your experience kind of talking to some of those protesters?

It was

interesting.

I had covered like a lot lot of protests in my day, so to speak, as a journalist.

It reminded me of other ones in some ways.

It was a little surprising that I drove up there for that first court hearing expecting no one to be there, really, I think, as I remember, because usually court hearings don't have a crowd, you know, or protesters, especially something like this, where it's not like a policy issue.

It was more of just like a personal issue, it felt like for one family.

But, you know, there were these groups, you know, Facebook groups at the time of parents who heard about it somehow or family was involved with.

And that made sense.

The people wanted to come support or they felt like it was a policy issue because it was, you know, the government overreaching or what have you.

And so, you know, it was a passionate group of people.

A lot of them wanted to tell me their story of their child or someone they knew.

They had signage, you know, all these like homemade signs.

It felt pretty grassroots.

You know, it didn't feel like it was some like national organization that was paying people to be there or something like that.

Felt legit, you know, in terms of like, these are just grassroots people for the most part.

It was interesting because I think in any situation, everyone has like a little bit of their own agenda, you know, whether it's to like help the family, get their own story out.

So there was like this guy there, I remember named Kevin Hall, who was like part of the like Boston Anti-Psychiatric Association or something.

And he, he wanted to talk, and which was a little weird.

It was like, what?

Like, how are you connected?

You know, and so he wanted to get his two cents in there.

What was his angle?

Was it the sort of question of the somatoform disorder?

And like, I mean, I'm trying to think of what angle a psychiatric, an anti-psychiatric person could have it was the smattering on the sort of the beta five thing yeah as far as i can remember it was the smatter form situation of people telling you it's like in your head or something like that but it was it was a little strange like it felt a little like a different tangent you know off on a tangent i don't even fully remember why i interviewed him i guess i mean i was surprised there was a mom there from justina's hometown which is also the town i lived in west hartford connecticut who drove up you know and who heard about it uh on the news so this actually must have been after the first report yeah it was because the first report happened and then the first hearing was after it.

And so that was the other way people heard about it, actually, come to think of it, was because they had seen the report and follow-ups and stuff on national or whatever.

The people, just a number of people who, you know, were there to support basically.

And so I think because they were outside and making a lot of noise, they became part of like an ancillary part of the story.

And it wasn't really meant to serve as evidence that the family was right or not.

But in some sense, it did like back them up a little bit just because it was other people saying like, wait a minute, you know, just because they might be acting a little weird doesn't mean they're wrong.

And, you know, there are other cases of these medical mysteries and arguments.

And I don't know what else to make of it.

It was just people who supported them after seeing the news story.

Yeah.

Have you perused mitoaction.org at all?

Not since like 2014.

There were two groups.

There was one in Pittsburgh, which is ironically like the city I was born, you know, where I'm from, that's a mitochondrial awareness group.

And then there was the MitoAction, which I think was the one in maybe Boston or somewhere else, who I think I interviewed.

And then I think the one in Pittsburgh didn't want to get involved.

Interesting.

Arm's length, I want to say, or like early on was involved and then stepped back from it.

But no, I have not really perused their website for, you know, over a decade.

Yeah.

And obviously, like, this is much more top of mind for me because I've been researching this.

But

you might want to go look at it just out of your own interest, especially if you are thinking about writing a book on this.

It contains a lot of very specific information about what to do if you're being investigated for medical child abuse and specifically what to take off of your social media and what to say to doctors and what not to say to doctors.

And it's pretty alarming, actually.

And I sort of dug into some of the people who appear to have founded it.

And anyway, might be a worthwhile rabbit hole if you're so inclined.

I have trouble keeping myself out of.

rabbit holes.

So that's just

it sounds like potentially very like devious, right?

Like potentially on one hand, it could be like telling people how to orchestrate a cover-up, right?

Or

get away with a crime.

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