Justina Pelletier Part 4
59:50 Share

I'm Andrea Dunlop and welcome to Nobody Should Believe Me Case Files. Today, in the final installment of our Justina Pelletier mini-series, we are rounding out the conversation with Dr. Becks. We'll be talking through the Pelletier trial and recapping some of what we learned about the case there, as well as talking through the many ways in which this case really mirrored the Kowalski case that we covered in Season 3, albeit with a very different outcome.

If you want even more on the Pelletier case, you can listen to the complete deep dive that Dr. Becks and I did on Patreon of the case and the Peacock series. And you can do it for free right now on Patreon as I have taken all of those episodes out from behind the paywall.

And a reminder that being a paid subscriber to the show, either on Patreon or Apple, you get two bonus episodes every month with Dr. Bex and me. You also get early access and ad-free listening. My team and I are working hard on season five right now. And for the first time ever, we are going to have the whole season ready to binge for subscribers when we launch in January. Very excited about that.

If monetary support is not an option right now, please do rate and review us on Spotify and Apple and tell a friend. We are an independent show and we always will be. So word of mouth support really means so much. Also, if you'd like to see my face, in addition to hearing my voice, you can now check us out on YouTube.

I put makeup on and everything. And a final reminder for today that if you or anyone you know is a victim or survivor of Munchausen by proxy abuse, please do go to munchausensupport.com for help. You can find that link in the show notes. And if you'd like to support the work that my colleagues and I are doing over there, donations are also much appreciated. With that, enjoy the show.

We all have plans in life. Maybe to take a cross-country road trip or simply get through this workout without any back pain. Whether our plans are big, small, spontaneous, or years in the making, good health helps us accomplish them. At Banner Health, we're here to provide more than health care. Whatever you're planning, wherever you're going, we're here to help you get there. Banner Health. Exhale.

This episode is brought to you by Amazon. The holidays are here, and you know what that means? It's time to get your friends and family the gifts they deserve. Take the stress out of shopping with Amazon's great deals and low prices on a huge range of items from toys to tech and much more. Whoever you're gifting for, Amazon has great prices on everything you need this holiday season. Shop Black Friday week starting November 21st.

Hello, it's Andrea. We are back today with Dr. Becks, pediatric hospitalist, burgeoning munchausen by proxy expert, and my co-host from Nobody Should Believe Me After Hours. And we are here on the main feed today to wrap up our discussion about the Justina Pelletier case.

So in our first episode that we did together on this case, we left off with the Pelletiers taking their case to court. In the last few episodes, we heard from the reporter who broke the story, and we will talk about that conversation. I thought that was very interesting. And given that you and I watched the Peacock documentary together, it was really fun to kind of get to check in with him and hear directly from him about his experiences, especially with

this family. So Bex, take us up to the court case with the Pelletier. So they get their daughter back and they decide to sue the hospital. What were the charges? What are they suing the hospital for?

So it has a lot of overlap. I feel like I'm a broken record, but a lot of overlap with what was brought up again in the Kowalski case. And I'm not sure how much the Kowalski's lawyers looked into this case or kind of on either side, but there is terminology that is just almost word for word. But the big charges or the big claims were for medical negligence or medical malpractice in the sense that

They disputed the diagnosis that Justina came in with, the mitochondrial disease diagnosis, and they, quote, did not treat that condition and instead did this radical treatment program that involved, you know, the psychotherapy and the occupational therapy and the physical therapy and treatment.

prohibiting the family and the previous doctors from kind of being involved in the care. And then they also filed on the grounds, it seems, of civil rights or kind of on the idea of parents' fundamental rights to be able to be a part of their children's medical care, to make medical decisions for their child.

And basically that this was all done in an intimidating, threatening way, which is some of the terminology that was used in the Kowalski case. Because of all of this, they acted with gross negligence in the care of Justina. Got it. So yeah, really similar to the Kowalski case where you have the things they're suing for medical malpractice, medical negligence.

the infliction of emotional distress, I'm guessing in there, and then sort of the violation of their civil rights. And because this case went to court, I can't say I'm happy this case went to court because I think it was in so many ways the precursor to not only Kowalski case, but some other big cases in this arena that we're going to cover on the show. But it is helpful because I think we would not have known so much about what actually happened if this had not gone to court. So that is the one advantage of things going to court.

So we learned a lot more about what actually happened from the testimony of the various doctors. And we kind of had some key players in this case. So can you kind of talk us through, like, who were our main sort of witnesses or who are the doctors really on the Boston Children's side?

So Jurian Peters is the one we spoke about on the first episode. He's the neurologist that, you know, walked in and saw her for the first time. And he was the one that was there the day that the parents were kind of saying they were going to take Justina out of the hospital. And then Mark Corson is the one who originally diagnosed Justina with mitochondrial disease. He was from Tufts. And he also...

comes in, I think more by deposition. He was kind of odd. Like he seemed not to really want to put his face out there all that much, which is different than kind of his counterpart, I would say, in the Kowalski case, which was, you know, kind of Kirkpatrick and Hannah, the ones who diagnosed her with CRPS prior. And then Alice Newton is the child abuse pediatrician or the child protection team director. So the counterpart would be Sally Smith in the Kowalski case. And the

Very similar to Sally Smith, she came up quite a bit in the whole talk of what was Boston Children's, what was Alice Newton, I think what role each of them played. And then as a result of this, just like what happened to Sally Smith, which we covered when

when you interviewed her as well, but how much it affected their career and their life and brought up old cases where now there's other families coming out and questioning their care and their opinions in previous abuse cases as a result.

So you have a similar constellation of folks on that side. And I have to say, I wanted to just zero in on Dr. Mark Corson for a minute, because as you mentioned, he was a treating physician. So he's on the actual treatment team. So I think one of the things that gets so murky about these cases, and especially because they are often covered not very responsibly in the media. And I think the media can really position these as like doctors disagreed or doctors versus doctors. And I think we want to really ask some questions

follow-up questions if you hear something being presented as doctors versus doctors. Number one, who were the treating physicians? Who were the physicians that actually spent time with this child who actually were involved in their treatment? And then, you know, which doctors were called as expert witnesses? And for those doctors, what is their actual expertise and what is their sort of background as it pertains to doing court testimony?

And again, there's nothing wrong with, obviously, I believe that defense should be able to call, or in this case, the plaintiffs should be able to call expert witnesses. That's part of the process. But there's something that's really taken off in the last couple of decades where you have basically like a whole ecosystem of doctors that do paid testimony. And again, nothing wrong with being paid for your time as an expert. Like that is perfectly kosher. But there really is this ecosystem at this point of doctors who are making a lot of

of money testifying on behalf of families and they should not be presented as neutral arbiters, right? I think the problem you get into is when you're just saying like, this person said this about the case and you're not mentioning that that person was being retained by one side, right? That's not a treating physician that just happened to have an opinion that saw that child.

So I think that those are all really important. So Dr. Mark Horson was a treating physician and of course from Tufts, right, which is a really august institution. You know, this is not like Dr. Kirkpatrick and his no board certified in anything cash for ketamine clinic kind of, I don't know if it's actually in a strip mall, but that's sort of where I imagine it. Dr. Mark Horson seems like a real doc.

And I could never quite pin down what he thought about this case because he did, again, give the clinical diagnosis to Justina Pelletier of having a mitochondrial disease and apparently also gave that diagnosis to her sister. And I believe her sister's medical records were presented at court. Is that right, Bex? Correct. They were subpoenaed. There was a lot of back and forth. And now

because of what we know, there was multiple motions to try to get her records because they said if part of your kind of foundation is going to be that this diagnosis was correct from the get-go and by definition, this diagnosis came from the fact that her sister truly was diagnosed with mitochondrial disease, you are opening us up to bringing those records in to show that that really is the case. Were we ever able to get to the bottom of whether or not the sister was diagnosed with mitochondrial disease? Alex?

All I can see is the motions like requesting her records. Her actual records aren't in any of the, what at least is available to us. I do think that even the mitochondrial specialist who they brought in from Canada, who I thought was kind of a turning point in the trial, but I think he did even mention that sister had truly been diagnosed. But again, I don't know if he, what he saw or didn't see. Right, right. That's kind of a difficult rabbit hole. But yeah, I mean, Mark Corson, you know, and Bo Berman, who we spoke to in the last couple of episodes,

mentioned that he had talked to Dr. Mark Corson, like sounds like on background, so we didn't quote him, but he said that he seemed very convinced. But then, of course, Beau is covering this while it's happening. You know, his coverage, he didn't cover the court case. He covered the situation while it was happening. So in 2013, in 2014, you know, while she was still in state custody. So I also think there's a chance that that could have evolved. We just don't know. He certainly was not like a Dr. Kirkpatrick who was like,

full-throated support of this family and their lawsuit. He just seemed more in the middle. I just couldn't pin him down. What are your thoughts on him? Yes, I agree. And also the fact that in the trial, it came up that even Tufts had filed a 51A, the same report on this family for concerns of

Munchausen by proxy medical child abuse over medicalization. And it seemed that there were even a pretty decent group of doctors at Tufts that felt differently than Mark Corson did. Now, again, everybody has their specialty and depending on what your specialty is, you do have a, you know, a right to your own medical opinion. You know, Andrea and my radar start going off when everybody who walks through your doors is diagnosed with a specific thing or with a group of things or

how quickly you're willing to kind of escalate treatment, which that does not seem to be, at least from what I understand this case to be, more about the diagnosis and how it came about. And interestingly, for any of those who did listen to our talks on Patreon about some of the websites involved with mitochondrial disease,

So Mark Corson is now on the physician's advisory for MitoAction.org. He's now working, I think, somewhere in the Carolinas in one of these clinics that's doing the genetic testing for mitochondrial disease. So his career did seem to change a little bit. I don't know how it all played out, but he is no longer with Tufts or with an academic institution. He's now down kind of in one of these clinics as well. So maybe time will tell. Sort of an unknowable entity in some ways, because I think

There are all of these complexities. And as people often point out, right, as the alleged perpetrators often point out in these cases, like, well, doctors have egos. Sometimes doctors get really attached to a diagnosis and just keep defending that regardless of the evidence. And like, that is all true.

I think I have opinions about which side that happened on here, but it's certainly the case that a doctor could feel very, very strongly that this diagnosis is legitimate. Now, of course, I want to point out that Justina Pelletier having a mitochondrial disease does not rule out

You can be a victim of Munchausen by proxy abuse and have some kind of medical condition. It is often the case that victims do, right? Because it's so frequent for victims to be born premature, again, often severely premature, where you're going to have some kind of issues. We know Justina Pelletier was born premature.

We don't know how premature, we don't know. Some of her medical history came out during the trial, but there's still a lot of questions about that. So we have the reports of her parents and that's still kind of the primary source for a lot of her medical history. There could be something genuinely wrong with her as, you know, just because there are sometimes things wrong with any child or because as a result, as a direct result of the abuse, right? So it is totally possible that she could have some kind of

of mitochondrial dysfunction, some kind of mitochondrial problem or disease or genetic predisposition to some kind of mitochondrial disease, and also still be the victim of abuse. So nonetheless, I think he was the biggest question mark other than that. But as you said, Tufts had previously reported this family for abuse, and I believe one other hospital had as well. Am I misremembering that? Correct. There was at least two prior reports. And then the pediatrician in this case

Compared to Dr. Walsner in Maya's case, who kind of, you know, had only seen her a couple times and really said from his opinion, he didn't see any elements of abuse, but saw her predating kind of the whole time at all children's, et cetera. He'd seen her, I believe, only five times during that time period and just said he hadn't seen any evidence of abuse. But he did seem to feel strongly that, you know, he appeared as a plaintiff's witness in the case. So he obviously did feel strongly that this had not been an abuse situation.

Correct. And the pediatrician in Justina's case, interestingly, Linda comes out in the documentary, the mother, and says she was blindsided by what she heard from the pediatrician because he had always seemed extremely supportive and appropriate and willing to listen and, you know, a good pediatrician from her opinion. But then when the records came out, he had documented concern for over-medicalization, Munchausen by proxy. It does not seem he called it in, although I can't say that for sure.

But it sounds like she was quite blindsided by the fact that he had had those concerns because she said she didn't see signs. And to speak from Jordan's case, I know that some pediatricians feel torn between calling it in and knowing they are going to lose eyes or lose care of that child.

versus documenting, keeping a close eye, making sure nothing's crossing huge lines and feeling like they can maybe somehow keep the child safe. And they find themselves torn between that. But it does sound like documentation showed concerns. The general pediatricians did.

Yeah. So again, you have a case where there are multiple reports of either people who called in reports of abuse or at least concerns about abuse from multiple parties, different hospitals, not within the same system. For me, that gave some insight into why they ended up at Boston Children's to begin with when it was not the closest hospital by. It sounds like maybe they had worn out their welcome some other places, which is something we often see in these cases.

What learning about this whole trial and sort of the whole picture of Justina and her past medical history and the past concerns about abuse really gave me insight into is how these cases become, you know, distilled down to something that does not have enough nuance.

Right. Because this whole case in the media and again, Boston Globe did a terrific job reporting this. I think they were very, very thorough. They seemed very, very fair in their reporting to me. So if you are interested, I highly recommend going and reading their reporting on this case. They followed the entire trial while it was happening. And it becomes about is she a victim of abuse or does she have mitochondrial disorder?

Is it somatoform, like the hospital says, or is it mito? And depending on which one of those things it is, you're going to get a yes or no with abuse. And that's just not the right way to look at it. And same thing with the Myakowalski case, right? That became all about proving whether or not she had a legitimate diagnosis of CRPS or not. And first of all, I think there are plenty of reasons in both cases to question.

question whether those are legitimate diagnoses, but even if they are, that does not rule out abuse because if a parent is intentionally escalating treatments when there's no evidence that they need to, if they are lying to doctors, if they are fabricating results and tests and fabricating diagnoses, then that is still abuse and that is still cause for grave, grave concern. And in both cases, ample reason to believe that the child's life was at risk.

These were very, very serious cases that involved very serious treatments. So in fact, we did get some more information and context as to the question of what did we learn during the trial about whether or not it's likely that Justina Pelletier actually has a mitochondrial disease.

So anyone who listened to our coverage of the Kowalski case knows that Dr. Crane from Stanford was personally, I would say the star witness for the defense, although it seems it fell a little bit on deaf ears as far as the jury goes. But he was really my aha moment. There were a couple other people that there were moments where I was like, oh,

But really, Dr. Crane, and again, he never met Maya. He did not examine Maya, but his experiences and his knowledge of CRPS and of ketamine treatments in children just to me stung.

stood stood apart. And really, he spoke so well on the stand about what these cases look like and how even without examining Maya, he did truly have concerns that she had CRPS. And I I stand with Andrea, though, that at the end of the day, that doesn't mean it was not abuse. But I did think he was extremely convincing as to why this case

has red flags because it's that most severe form of the most severe thing that responds to nothing or doesn't even go through those regular treatments, has to go to the biggest treatment. And that is the pattern I think I see more and more in these cases. And so in Justina's case, to me, that star witness, and again, we didn't get to watch it like we got to watch the Kowalski case, but gosh darn it, if I don't wish I could have. Lose months of your life to this one as well. Oh yeah, I mean, I would do it though. You know I would. Yeah.

Dr. Tarnopolsky from Canada, who was genetics metabolic specialist, who has a lot of knowledge and background in mitochondrial disease. And again, this was my doctor-like...

moment of hearing him talk and he put up all the tests and all the things that go into a true diagnosis of mitochondrial disease and how Justina had each and every one. And I know what all those words mean. I know it seems like very medical speak, but there were certain things I needed to hear in my head to not necessarily, like you said, whether she has mitochondrial disease or not,

But the fact that if none of those things were true, yet she was undergoing these big surgeries or having these big procedures, then how did we get there kind of a thing or just really put up that, wait a minute. But I thought, you know, and that kind of question. And then it was the horse videos for me. Oh, yes. Take us through the horse videos. After being an ice skater prior, kind of after when she was 16,

Still, just so everyone understands, still in a wheelchair, still not walking in the care of parents. After she's been discharged from the hospital and the DCF case is over, she's been returned to her family. She is now horseback riding, which is a common therapeutic activity for kids. Like, for instance, kids with cerebral palsy or things can still ride horses. And so, however, she was not just riding horses. She was competitively riding horses, too.

and using quite a lot of leg strength to get that horse to go. And the concept that it uses the same muscle groups and the same strengths and muscles to be able to do the things she was doing on horseback as it would, yet she was unable to walk just pathophysiologically did not make sense.

And between that and all of those tests being negative, again, it does not mean she doesn't have some mitochondrial disease that doesn't show up on tests. But if mitochondrial disease was the reason she couldn't walk, then the muscle biopsy, those tests, it should have shown in the muscles. And if she was able to do the things on the horse, she just shouldn't have been able to. And that was really my that.

that moment. And even the reporter, not Bo Berman, the other younger reporter who came on as well, he said that testimony really, really hit him.

That was really compelling. And again, this is not a treating physician. This is an expert physician that was brought on by the defense teams and by the hospital to explain to the jury this disease. The reports of his presentation were extremely helpful because he sort of went down this whole battery of like, if you suspect mitochondrial disease, this is how you test, this is how you test, this is how you test. And it was just like negative, negative, negative, negative, negative on down the line for Justina Pelletier. I think there's a lot of confusion created about this deliberately in the media because I think that these

Quite frankly, at this point in my personal journey reporting on these cases, I'm comfortable saying this. I think that many media outlets, and I'm not talking about Boverman, I think he just did a good job straightforwardly reporting this case from what he knew at the time, you know, a very complicated, sort of overwhelming case to report on. I'm not talking about him here, but I think Boverman

You know, the folks that really lean into this narrative about medical kidnapping and sort of false reporting and that kind of thing. So your Daphne Chen's, your Mike Hicks and Boggs, they so often make it sort of laser focus on this one diagnosis. And what I would and I think it's because those stories like freaking parents out that an institution is going to steal your children just gets more attention. I think it just plays better than.

an abuse story, right? I think people really have a hard time reckoning with the fact that people abuse their children. And I think that they're actually sort of more comfortable thinking that an institution would just snatch up your kids, even if it doesn't make sense, right? I think there's some really complicated emotional stuff there. And I think that, unfortunately, media outlets often lean into the thing that they think will get the most attention. And so I think that is what happens in these cases. So I suspect that some of it is

pretty much a feature, not a bug, right? I really encourage people to just sort of think critically about these stories because the family, you know, in suing the hospital is asking you to believe is that this child has, again, kind of as you said, Bex, like the single most rare presentation of this disease that is simultaneously the most severe and affects every system in her body. And yet she can ride horses and ice skate. And even...

And even if you believe all of that, even if you believe, okay, this child is a medical mystery. She has this, you know, really, really rare form of this disorder that doesn't show up in any of the normal tests. I mean, that such a thing exists, right? There are those like one in a million cases and then medicine discovers them and goes on from there. But like, even if you believe she's that one in a million case that doesn't meet any of the criteria, then number one, you have a disease that sort of turns off and on at the will of seemingly the parents. Right.

And then it never explains the whole thing, right? It never like accounts for the entire medical history. It's always a constellation of things that just like do not make sense together from a medical standpoint. And again, you're never talking about one doctor that reported. Like that's the other thing is, you know, we saw the same thing in this case last

where the child abuse pediatrician and the neurologist, and then one of the doctors from Bader 5 really, really got scapegoated. And these doctors conspired to punish this family and steal this child and et cetera. And again, nobody ever presents a possible motivation for those people doing it because it doesn't make any sense because there is no motivation. It's like, even if you take those people out of the game, there was a bunch of other people that were concerned about abuse and a bunch of other people that reported abuse. And because BAF

Uncanny, there was no police investigation in this case. I mean, a lot of times if there is a police investigation, then you get, you know, or because the only investigation that we know happened, happened on the DCF side. None of that is public record. We don't know what the other people close to the family said. Like, I think it's also important, number one, what all the doctors said, but also like what did the neighbors observe? What did the teachers observe? What did the other people who know this family say about what was going on there? It's more than just a yes or no diagnosis, right? Yeah.

And I think that's what makes these hard. It is so much more than just what meets the eye, I think. And how every one of those checkboxes, I think, for me with Dr. Tarnopolsky is, to me, it is very unlikely to be mitochondrial disease explaining everything, like you said, or explaining the severity of all of the symptoms. And so...

she also had undergone multiple workups where they hadn't found another clear etiology. And so that is where somatoform and that whole world does become more likely. So I think it's not that it could or couldn't be those things when things are so severe and so escalated out of any realm of possibility. You think that even if there is something underlying, there is probably a

exacerbation because of the somatoform on top of something else, then I would argue you don't treat somatoform disorder with multiple abdominal surgeries. It's just not what happens. So how do we get there? And her case actually...

I mean, as you know, but I think we're going to talk about goes a very different way than how Maya's does following all this. I wanted to just kind of get you to opine on something because this has really been falling into place for me as we covered Joe's story last season. And in talking in sort of looking from the outside at both Justina Pelletier and Maya Kowalski, who were teenagers at the time. Well, Maya Kowalski was 17.

Started at 9, 10. Yeah, and Justina was a teenager when this case happened. But talking about something like conversion disorder or somatoform disorder and whether or not that that...

is almost a necessary element for victims and survivors because if that is, even if you're saying like, okay, yes, abuse is happening. So the abuse is the thing that you need to really solve for, right? But then what it does to someone's

psyche to be a victim of this abuse, to be constantly being told that they're sick when they're not, or that something is causing their illness that is actually being, you know, induced, or this is something Joe gave us a lot of insight on and sort of this, this constant pattern of being told something and then really being very disconnected from your body and being unable to understand when you're having symptoms or if you're not having symptoms. And we hear a lot of,

of this from survivors of this abuse, right? That it sort of can go one of these really extreme directions where either they always think they're sick and they feel the need to sort of seek out a lot of medical attention. And in some of those cases, heartbreakingly, physicians actually suspected them of Munchausen behaviors when in fact, even though it may look the same, it is a very different reason, right? We always want to emphasize that Munchausen, Munchausen-Miproxy behaviors are characterized by intentional deception. It's not the same thing as

hypochondria or being so systematically disconnected from your own body by abuse that you don't know whether you're sick or not, or you are feeling like you're sick, your body is having symptoms that you can't explain. Or, you know, I've heard also of many cases where, you know, survivors of Munchausen by proxy just absolutely refuse to go to the doctor no matter what is wrong. And that can lead to delayed diagnosis of something serious that can lead to just

basic bad health because you're just not taking care of yourself. So it does present an extremely complicated picture. And I think because both of these victims were older, I think that there's a chance that may be that that somatoform disorder that I believe we have reason to think was the correct diagnosis is a result of

What up until then likely was a lifetime of abuse, right? There was a lot of compelling evidence that came out during the trial that this was an abuse situation. So I just, I wonder what you think about sort of the interplay of conversion disorder with this abuse and if that can just sort of result from it.

This is probably the thing that keeps me up at night more than anything is where did it all start or how did we get here? And because of when I have met some of my patients who have been diagnosed with it,

We're so far into the story that I want to use what I learned from those cases to be able to recognize things sooner. So maybe we don't ever get there. And I'll explain. So we had a patient that was thought to be a victim of medical child abuse and was reported to DCF, who was more in the age of like four to five, wheelchair bound, tube fed, all of those things, and was separated by the courts. And within a day,

out of the wheelchair, eating McDonald's, functioning like a normal kid, smiling, happy, playing. And everyone said, wait, like, how did that happen? And the thing is, she was still so young that of course it still affected her. And I don't know where she is now, but it was almost like the veil was lifted. Well, wait, wait, now I can play and I can eat McDonald's like awesome. But

she kind of wasn't in it long enough to maybe develop some of those pieces that you're talking about. And so when you meet the patient at 10, like Maya, or at 14, like Justina, you often don't know the whole story. You can't go back to newborn period and really see what this child went through. And often there's a point when it escalates, right? So for Maya, I would argue it escalated at 9, 10, but there are some people who talk about

her asthma diagnosis and other things that she maybe had already gone through that could have already kind of predated what happens that we know the story from. And so I would argue the things she was already maybe being over-medicalized or there were these little pieces that that would be a setup for having conversion or somatoform because we do believe that they are truly experiencing the symptoms.

For sure, the longer it goes on, the more difficult it becomes to unravel because by the time you see kids getting older, their psyche has been really deeply impacted. And also there is just like a different dynamic with the parents and Dr. Mary Sanders has written about this in some of her work.

that they become collaborators in the story. And it's not to victim blame at all, but they sort of have an understanding that their parent will get in trouble, that they may be separated from their parent, that they'll die, that they need to keep up the end of the story. There's just a much different dynamic going on when the kid gets older, as when you said, like the kids that are separated younger. I mean, like one of the ones that we covered, Alyssa Wayburn, they talked about her in the

Yeah.

I wanted to touch on the defense, as we mentioned, had an expert who testified about whether as to the question of whether or not mitochondrial disease was the right diagnosis. And the pelleteers also had a doctor who testified on their behalf, who again, not a treating physician, but an expert about why he felt this was the right diagnosis. And this person, Dr. Bowles, quite a well-known expert, facts

Talk to us about Dr. Bowles.

So similar to Chopra coming in kind of after the whole all children's story, actually it was Beata who had found him, or at least that's how the story goes. Dr. Chopra, yes. No, that was confirmed. That she was the one who sought him out. And so Dr. Bowles is very much known in the mitochondrial disease world. He also is affiliated with MitoAction.org and most of those websites. He is someone who has spoken about

about medical child abuse. And I would say he has not necessarily said he does not believe in it at all, but he does definitely speak on the grounds of a lot of parents of children with mitochondrial disease could be accused because of certain things. And

Therefore, you need to get a doctor who understands this disease and gets behind you. And he supposedly did genetic testing of Justina after the fact and confirmed that there is something on his test, his specific test for mitochondrial disease that he found to be positive. And just to unpack that element a little bit. So I believe Dr. Bowles has like a genetic sequencing test, right, that would show a

predisposition for a mitochondrial disorder. It's not like a widely accepted, peer-reviewed test that is used by the medical establishment for diagnosing mitochondria. That's what I understand. And again, it's not that list of tests that Dr. Tarnopolsky put up is...

are the tests that I know of that we do. And there are genetic tests for some of those conditions that I mentioned earlier, those most severe of the mitochondrial diseases. This seems to be that concept of, again, if you tested me and all of my friends, how many of us would come up with something versus if you come in with certain symptoms, is something found? That's where the question is. With the genetic testing, which comes up a lot with the sort of mitochondrial

stuff. What it brought me back to was in my second pregnancy, we had like a weird test result in my first trimester, which was then sent us down just this like rabbit hole to hell for a little while. Everything worked out. Baby's perfect. But the doctor, because we were doing this other, potentially doing these other tests, they asked us, you know, do you want to check for this whole laundry list of things that you could check to see if

basically like not does your baby have it or not, but like, are they genetically predisposed to have this? And I was like, well, if I'm given this information, what am I going to do with it? And they're like, well, nothing. I mean, and so I was like, okay, no, I only want to know something that's going to impact my decision about whether or not to continue with the pregnancy. Like if this child's going to be born with something where it's incompatible

with life, you know, then that is a totally different, like, I don't want to know if there's a higher chance that they're going to get this because then that's going to be in my head and there's absolutely nothing I can do about it. So it seems like a lot of these sort of genetic sequencing or genetic tests are that kind of thing, right? I mean, even just using one of the sort of commercial 23andMe, you can get results

now that will tell you like, oh, you're a little more likely to have this. And I mean, obviously there are some instances where this is super helpful, right? Like people with a history of breast cancer getting tested for the BRCA gene, right? That is something that you're going to make medical decisions based on. But it seems like there's a lot in this area that just is sort of like, okay, that might be a useful piece of information if you're trying to get to a diagnosis, but it's not like a thumbs up, thumbs down.

And it's not causation. What scares me is the fear mongering or whatever that comes along with it is that if you told me one of my children or I had, like you said, a gene that can maybe lead to intellectual disability, like they may struggle, you know, in school and things like that. Would I rather know that or would I rather just go through school with my kids and see how they do and work with them as they are?

are and has they come to be instead of with some already preconceived notion that something could be wrong versus I actually was going to say the BRCA gene as well, that there are certain things that, you know, I have a friend whose mom passed away from breast cancer. And so him and his sisters being tested for the BRCA gene was important because you would start screening earlier and you would want to know your risks. And I think that is different. There are also conditions in childhood that

we can treat with gene therapies now, spinal muscular atrophy is one, that you would wanna know what gene they have so you know if they qualify for these trials. This other world of genetics, it's a really an unknown frontier that I think scares me more at this point when it's in the hands of people that don't always know. And parents, I'm sorry, like it is, like you said when you were pregnant, sometimes ignorance is bliss, sometimes giving certain people all this information

is not a good thing. And I understand it's their child, but it just opens up doors, I think, to seeing your child differently and having things play out that may not have been there otherwise.

So I just want to talk about kind of some of the other stuff that did come out during the trial that was very compelling. We learned a lot about sort of what happened during essentially this separation test, right? Because one of the most compelling pieces of evidence that you can get, other than, you know, some other things they had here, which was a child abuse pediatrician doing an extensive medical record review and making a determination of abuse, which did happen in this case. That's why that Dr. Alice Newton was under such scrutiny.

So that obviously is a compelling piece. And then these previous investigations and or suspicions of abuse from multiple institutions. And then how did the sort of simplest way I think you can look at, OK, you take the parents out of the picture. How does the child do? And now during the time that Justina Pelletier was hospitalized.

Lou Pelletier was telling anybody who had listened, they are torturing my daughter in there. She is declining. She is getting worse. They are not giving her the treatment that she needs. Again, very analogous to the Myakowalski case. And in fact, when this all went to trial, we learned that that was very much not the case and that many, many things about Justina's health had improved pretty dramatically while she was separated from her parents. So, yeah, Bex, can you sort of talk to us about what was going on with her health actually behind the scenes? Yeah.

And just so people understand, like I was talking about in that younger patient of mine,

Most of these kids are not going to stand up the day you separate them and get out of their wheelchair and start eating. Again, sometimes their bodies have been affected by years of this, or there is some medical stuff underlying it all, but that's what needs to be teased out in the course of, you know, of that hospitalization. So she did remain in the wheelchair. Again, similar to Maya, there was a lot of difficulty in getting her, I think, to engage in the occupational therapy and the physical therapy. So it's tough to say exactly

how much more grounds would have been covered if she was kind of willing to participate. But she, from what I understand, had no surgeries, no exacerbations, at least once she kind of came out of the original presentation of her GI symptoms, at least to the point that it warranted any further studies. She was, at least her nutrition was being maintained where she was

gaining weight or at least stable in weight from where she had been prior, less relying on the tube. And then also it sounds like, again, we didn't see a lot of it in this trial because of the way it happened, but it does seem that even in OT and PT that she was

showing improvements, not to that extent where she jumped up out of the chair, but to where they were documenting things that maybe aren't seen, but that they see in the therapies as being improved. Yeah. And interestingly, you know, when we're talking about this fact that this is a teenager, so 14 years old at the time of hospitalization, and actually the Pelletiers did get visitation. They had regular visitation, I believe the whole time. And one of the things that they

openly bragged about in the Peacock documentary, which they were a part of, is that they broke all the rules all the time. They were giving examples of how they would pass notes back and forth because, of course, you know, they were given visitation, but there were rules around it. They were not allowed to discuss

medical treatments. You know, when we're talking about the psychological dynamics in these cases, like that's why it's important that they're not allowed to talk to the child about their health, because if that person is an abuser, they could be reminding that child that they will be in trouble if they are not acting sick. And in fact, I think in this case, when it's an older child, that that's

implicit regardless of what they say but they openly admitted that they were passing notes back and forth or they showed how they did it these notes to her were saying things like don't trust the doctors don't believe anybody i mean really sowing distrust so i think that could also be a reason that maybe she didn't make as much progress as she might have otherwise is because she was being discouraged from working with them and certainly when you have a child that age

it's difficult. But I think one of the things that really stuck with me from the testimony of one of her treating physicians from Beta 5 was that she said this was the longest period of Justina Pelletier's life that she had gone without a major medical intervention. And that was just heartbreaking. So nonetheless, this case went forward. It went to trial. At the end, the jury found in the

the hospital's favor this time. So the Pelletiers did not win their lawsuit against the hospital, and the Boston Globe quoted some of the jurors from the Pelletiers, and they talked about why they found the evidence compelling. And in fact, some of them mentioned that it was really hearing from those doctors that were caring for her while she was hospitalized that they really found convincing. So this had a good outcome in this sense, but

I don't think that it had the outcome that it should have in the other sense, which is that Justina Pelletier was already back with her family. She'd been returned to her family and she has stayed in their care. Bex, what do we know about what has happened to Justina Pelletier since she was returned to her parents? This is where I think...

I hope people listen. And I think this is that big juxtaposition between these cases is that Justina of Maya Kowalski, Gypsy Rose and Justina, she is the one that was sent back with her family. And even now she is an adult and she is still under the care of her family. I don't know if that's any kind of a guardianship or anything like that, but she is still living with her parents. So

Since then, at the time of the trial, she had multiple surgeries. So she had a diverting loop ileostomy. So that is where you pull a part of the bowel or the intestines out to the wall and you literally have a bag attached to your abdomen where your stool comes out. And then she had removal of the cecostomy that we talked about earlier. She had her gallbladder removed and

She had scopes of her upper and lower GI tract. She had what's called a rectal biopsy where they take tissue to check for problems in how the bowel is functioning. She had a PICC line, which anyone who knows from the Kowalski case can be used for IV nutrition or for IV medications at home. And this is really in rare cases medically in my career that we use this or that children have this.

And then she'd been tube fed. And then the big one was in 2018 when she had her entire colon removed. Compared to these other cases...

This really was eye-opening to me because I didn't know that piece, having known obviously what had happened before. And it's overwhelming. It's horrifying. And I believe that her parents, you know, they're still on social media. Her mother reported that she'd had another stroke a couple of years ago. Justina appeared in the Peacock documentary. You know, there was another element that we didn't really get into in detail. We talked a little bit more about it on the Patreon feeds, and I'm going to make actually all of those videos.

free to listen to for a period of time. So if you really want to go down a whole bunch of other rabbit holes about this case, you can go listen there. But there were some interesting family dynamics with the siblings in this case. The siblings were very supportive of their parents. They were very much supportive of this narrative that she'd been kidnapped. And the Peacock documentary was able to talk to Justina, but one of her sisters insisted on being there. And that definitely

dynamic made me really uncomfortable. Yeah, she's had a horrifying path after this. And we cannot say for sure. We do not really have the evidence in front of us necessary to say, like, was this, you know, abuse or not. But all of the evidence that we have heard and quite a bit came out about her medical history during the trial is that this was a case of abuse.

And in a really extreme case at that. And when you compare that with Maya Kowalski, who had one hospitalization, I believe, after Johns Hopkins for some nutrition, you know, eating stuff. But other than that, has by all accounts thrived and lived a healthy life since she was discharged from Johns Hopkins. And the difference being there that her perpetrator was taken out of the equation. And it's really heartbreaking. And I think it kind of speaks to.

for itself, to be honest. So just before we go, I wanted to know, just having been a little bit down the rabbit hole with me on this case, what was your take? You listened to my interview with Beau Berman. I thought he was very measured. It was really interesting to hear his experiences with the family in particular, just having spent a lot of time with them. I actually thought what he had said about the hospital communications and sort of some of the

problems there did resonate with me. And I wonder what you think about, like, that's something that's very much on my mind, especially as I am, you know, presenting to some of these groups and really talking to some of these groups a bit more about, especially about how they interact with the media. What do you think,

hospitals could do better given the restrictions that they have. I do feel that they don't do enough to speak up in these cases. I'm not sure exactly who that responsibility falls with, whether it's the hospital or if it's the American Academy of Pediatrics or like who exactly the body should be, but someone should be presenting the other side of this. There needs to be another voice in the media. I think it's just not enough to do that little PR statement that says our patient safety and privacy is the utmost like

Okay, we get that. But this whole media narrative is really spinning out of control. What was your take on the conversation with Bo and what thoughts do you have about what hospitals can do better? So that was the one part that I actually re-listened to because I wanted to try to kind of understand or see where he was coming from. And I think we've talked to Shapiro, the lawyer for the Kowalski trial about this as well. But really HIPAA is quite binding and it's there for a reason and we all are grateful it is.

The thing is, even on this podcast, I can speak generally about cases I had, but I cannot go into any specifics. And at the time when the child is a patient, I mean, we can't even let on that a patient is in our hospital. I mean, that's to the extent that HIPAA protects. And so it becomes difficult during that time when the families can be speaking. What actually concerns me is how much the families are able to say anything

and to kind of speak out about what's happening at the hospital. I mean, they have no restriction. They can say whatever they want. And then the hospital is so tied. I think to compare to what Bo mentioned about like a case where someone was in an accident, a prominent figure was in an accident, was in the hospital and the hospital put out a statement about it. I guarantee you that that adult person signed some form of a HIPAA waiver or

or approved, like their media department approved of the statement by the hospital. So like Shapiro said is, had the Kowalskis given them the HIPAA waiver to talk, they could have. So I don't know if the actual underlying principles of HIPAA need to be considered.

Or if after the fact, there needs to be some, you know, some kind of closure that maybe they can't do it in the time. I mean, one of the things that they said in the Kowalski case was all children said they wanted it to go to trial because it was the only way for them to even have a voice. And that's hard.

Yeah, I mean, certainly the difficulties are real and difficult to get around. And I think like some of the onus does really belong with the media. There are also cases of like abusive head trauma and broken bones and stuff that get covered just as irresponsibly as Munchausen cases. But I think especially with Munchausen cases, there needs to be better media literacy for reporters who are going to take on covering a case. And again, I'm not speaking specifically about Bo Berman, but I think just in general, you know, I wish that reporters would sort of understand

understand the framing that they need to give to explain to their readers sort of what this is. And like, first of all, don't use that bad data that refers to it as extremely rare. I see everyone using that like old British study that is totally misinterpreted by the media all the time. So it's like,

make sure you actually get good data, like speak to an expert, just find one, talk to Dr. Mark Feldman, talk to me, talk to Dr. Bex, like find someone on that app set committee. We are here, we are available, we will talk to you. Like there is no world in which a media like gets in touch with our group and we do not give you someone that is going to give you the most up-to-date information that is based on peer reviewed research, okay? So that's like step one for responsible coverage. But I think there's a lot more to say about the media and its responsibilities to cover this abuse

in a way that's going to actually serve their readership. But I think with the hospital piece, I do think that sometimes hospitals sort of just say like, are so media averse. And this comes up for me, right? I'm always following up with people in the medical establishment. Now, at this point, I have a lot more luck because my show has built up a reputation and people will talk to me that wouldn't necessarily be eager to talk to other media outlets for good reason. But I do think hospitals need to just be like a little bit more

full-throated in their support. And there are many things you could say that have nothing to do with the case. It's just debunking the idea that doctors are kidnapping children. I mean, like, I think maybe there has been the presumption that that is such an absurd idea that they, like, don't need to direct it, to sort of directly address it.

And just even really being clear of like the doctors do not make the decision to shelter a child. That is made by the courts and they don't often. I mean, often you get a very, very short statement from the hospital. So I do think there's an element where children's hospitals need to have a better communication strategy and understand that this really this impacts cases the way they're covered in the media and that it's going to end up back on their plate anyway. So it would be much better if they were proactive in addressing it.

And maybe, you know, it's more like you said, it's being proactive. It's talking. It's putting it out there that we're mandatory reporters. It's putting it out there that we support mandatory reporters. That's why I think the AAP brief in the appeal on the Kowalski case is so important. And like I told you in our other piece,

That made me feel proud to be a part of the organization because they're speaking for mandatory reporters everywhere and how much these cases do impact all of that. And I think it's teaching our medical students and our residents. And like you said, it's about...

Being open to both sides in the media, I think anyone who watched Take Care of Maya and watched Battle for Justina Pelletier, lots of reasons, but Take Care of Maya came out before the trial. Battle for Justina Pelletier came out after. But I think we both came to the conclusion that Battle for Justina Pelletier had at least more of both sides. I mean, like you said, B. Yorker was in it. There were people who did get to speak publicly.

to the other side. They interviewed a child abuse pediatrician. They interviewed all of these people. It wasn't a puff piece for either side. It wasn't like, which Take Care of My was. I mean, they didn't speak to a single expert. They didn't even, they had hours and hours of deposition. I think they spoke to them. They didn't use any of it. Oh yeah. They either spoke to them and suppressed them or didn't even try. But I think this is obviously complicated, but I think it can be done better. It needs to be done better.

These little puff pieces. There was one in the Seattle Times about a doctor pushing back on child abuse accusations. And it was basically a puff piece and a PR piece about this doctor. And I was like, I would like to read a nice feel good piece about the doctors that are actually doing the hard work to protect children.

children. I don't think every one of them is perfect, but I think child abuse pediatricians are by and large heroic. People who are doing very unglamorous, very high conflict work

That is so grueling and so emotionally draining that most of us couldn't handle it for a day. And like, I want to see the nice write-ups about those people. So, you know. It's actually one of the reasons I reached out to you and that I'm so glad I got the opportunity to do this because it's

Of course, I can't say exactly what the doctors at all children's were going through. I can't say exactly what the doctors at Boston Children's were going through. But I can speak to what it is like to have a child sheltered in a hospital and trying to both take care of the child and mediate, you know, with the parents and deal with the DCF process. So

having someone who maybe can't be a voice to the specific case because of HIPAA, but who can at least, you know, speak to what happens in these cases generally, or again, just show both sides. Speak to the processes, talk about the actual issue, because there is so much, such a dearth of information about Munchausen by proxy in particular. Well, thank you so much, Bex, for joining us and helping us break down this case. Again, I'm going to temporarily make all of the episodes that we did about the Justina Pelletier case

free to listen to on Patreon. So all you've got to do is go and join as a free member of Patreon. There's some other stuff you can listen to for free on there. And if you want to just go much further down the rabbit hole in this case with us, feel free to listen there. And thank you so much, Bex, for being with us today. Thanks, everybody. Nobody Should Believe Me Case Files is produced and hosted by me, Andrea Dunlop. Our editor is Greta Stromquist, and our senior producer is Mariah Gossett. Administrative support from Nola Karmush.

♪♪♪

And have your eight hours of sleep. Get everything with Cox. Internet and a mobile line unlimited with Wi-Fi equipment included and without annual contract. Visit cox.com diagonal plus value. Offer for limited time only for new clients. Without annual contract means that there are no minimum duration agreements and charges for early cancellation. Apply additional restrictions.