What if the person a child should trust the most is the one causing them harm? In this episode, host Dr. Denise Millstine speaks with author Andrea Dunlop and pediatrician Dr. Katie Johnson about The Mother Next Door, Andreas’ book on real cases of Munchausen syndrome by proxy — also known as medical child abuse. We explore how caregivers, often mothers, manipulate the medical system to fabricate or induce illness in children. The conversation sheds light on the emotional, legal, and medical complexities of this abuse, while offering hope through advocacy, education, and the courage of professionals who speak up to protect vulnerable children.
What if the person a child should trust the most is the one causing them harm? In this episode, host Dr. Denise Millstine speaks with author Andrea Dunlop and pediatrician Dr. Katie Johnson about The Mother Next Door, Andreas’ book on real cases of Munchausen syndrome by proxy — also known as medical child abuse. We explore how caregivers, often mothers, manipulate the medical system to fabricate or induce illness in children. The conversation sheds light on the emotional, legal, and medical complexities of this abuse, while offering hope through advocacy, education, and the courage of professionals who speak up to protect vulnerable children.
The episode was made possibly through the generous support of Ken Stevens.
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Dr. Denise Millstine
Welcome to the “Read. Talk. Grow.” podcast, where we explore health topics through books. Our topic today is Munchausen by proxy, also called medical child abuse. Our book is “The Mother Next Door: Medicine, Deception, and Munchausen by Proxy” by Andrea Dunlop and Mike Weber. I'm your host, Dr. Denise Millstine. I'm an assistant professor of medicine at Mayo Clinic, where I practice women's health, internal medicine, and integrative medicine.
I am so excited about my guests today. Andrea Dunlop is the author of four novels, including, “She Regrets Nothing” and “Women Are the Fiercest Creatures” and the host and creator of “Nobody Should Believe Me,” an award winning investigative true crime podcast about Munchausen by proxy. Andrea is the founder of Munchausen Support, the nation's only nonprofit dedicated to supporting survivors and families affected by MBP, and a member of the American Professional Society on the Abuse of Children's MBP Committee, where she serves alongside the country's foremost experts. She lives in Seattle with her husband and two children. Andrea, welcome to the show.
Andrea Dunlop
Thank you so much. It's such a pleasure to be here.
Dr. Denise Millstine
Dr. Katie Johnson is an assistant professor of pediatrics at Mayo Clinic in Rochester, Minnesota, where she is a child abuse pediatrician at the Mayo Clinic Center for Safe and Healthy Children and Adolescents. Dr. Johnson has published articles in the peer-reviewed literature about medical child abuse and presented widely on the topic. In addition, she's collaborated to implement a new consult algorithm for cases of over medicalization in children and adolescents at Mayo Clinic. Katie, welcome to the show.
Dr. Katie Johnson
Thank you for having me.
Dr. Denise Millstine
“The Mother Next Door” is narrative nonfiction about the authors’ experience and exposure to Munchausen by proxy, focused on their work as an author and a criminal investigator, and taking readers through the topic by presenting three separate cases. The book honestly reads like a collection of horror stories that are so tragic you'll struggle to believe they could possibly be real and yet they are.
So on “Read. Talk. Grow.” we discuss books that portray health topics in an effort to better understand health experiences through story. In this case, we're going to talk about Munchausen by proxy, so our listeners can understand this complicated topic and even see that it might be more common than they could ever imagine. Andrea, this topic is personal. You've written several novels, and one, “We Came Here to Forget,” is actually about a fictional family that went through a catastrophe based on events your own family had faced. Will you tell readers about that and how the topic came to be the focus of so much of your work?
Andrea Dunlop
Yeah, absolutely. So I had a situation in my own family that took place 14 years ago now came things came to a head where my older sister, Megan, was investigated for medical child abuse of her older child, my nephew, and this situation really tore my family apart, and it was a really big and difficult event in my life.
And when my family and I were going through it, we ended up becoming estranged from my sister and my nephew because of it, because we believed that the abuse was happening. And when we were going through this, I just felt like we were the only family on earth who'd ever experienced something like this. Because this is not the kind of thing, every life has big tragedies, inevitably, but this is not the kind that people understand or know how to support you through or, you know, even have ever heard of or even maybe necessarily completely believe. Right? I think you do face a lot of that. Just disbelief, denial, not because of anyone's bad intentions, but just because of the shock that these cases, that these cases inspire.
So as a novelist, there's always that adage of write the book that you wish existed, that you wish that you could have had. And I really went into that process just knowing that eventually I would write about it. And then when I, you know, when my husband and I started talking about starting a family, when I got pregnant with my daughter, with my older child, it all just sort of came rushing back and I think a lot of people who are parents can probably relate to that, that when you become a parent yourself, any family stuff you have is going to come right back into the forefront. And it was in this moment in pop culture where we were having one of the waves. There have been several of the Gypsy Rose Blanchard story, which is usually the Munchausen by Proxy story that people have heard of if they heard of it at all. And in the show “The Act” on Hulu, which won a bunch of awards and was a huge hit for them, and I just felt like there's this sudden wave of awareness, but I don't know that people are getting it right.
That was the impetus for the book. And then, you know, I really thought I would write this novel and kind of get it off my chest. And there we go, have my personal catharsis from that creative project. And that's not what happened at all. So here I am. Here I am six years later. Yeah.
Dr. Denise Millstine
And we'll dive into the podcast and, you know, of course, “The Mother Next Door,” which is just to reiterate nonfiction and based on real cases. But it's interesting that you used your fiction to sort out all that was going on inside you. You even write in the book, “I always knew I would write about my sister eventually. Writers are prone to working out their traumas on the page,” and I think that's something we've seen in other episodes, too, where people are inspired by their own exposure to horrific events and can find fiction as a place to untangle that and actually even potentially come kind of more face to face with it.
So Katie, tell us your reaction to the book and also what it's like to be a pediatrician who focuses on child abuse.
Dr. Katie Johnson
It was a page turner for sure. And I actually split my time between reading the physical book and listening on Audible, and found it kind of just as captivating, switching back and forth, I think, because not only is it relatable to the work that I do every day, it was really gratifying to see that come out in a way that hopefully will be more accessible to more people, to really understand what this is.
Just like Andrea said, we see so much misunderstanding, not only among the lay public but among medical professionals. We are under-trained on this, under-taught about it. Yeah, just in the past two weeks, instead of doing an article review for our weekly kind of journal club, our resident chose to read the book and give us kind of a book club review of it. And so it's already been really impactful in the education sphere.
Andrea Dunlop
Oh my gosh. Well, Denise, can I just react? That's so meaningful for me, Katie, you have no idea. And also, I'm sure you've probably gleaned this, but pediatricians and people who work in child abuse are absolutely my heroes. It is such important work. I can't it's like harder than I think most people can ever, you know, endure for a day. And unfortunately, your treatment and a lot of the media has been horrific. And so I'm so glad to meet you and thank you for thank you for reading my book, and thank you for sharing it with your, with your colleagues. It really means a lot.
Dr. Katie Johnson
And likewise, we sing your praises in this field because we do face a lot of negative media and we just try to get up and, you know, tell the truth and look at things objectively. And so to have someone that has that gift for sharing with the world and with people who are going to pick this up in book form or in Audible, we really appreciate you being able to tell the story that that we live medically.
Dr. Denise Millstine
And, Katie, will you tell our listeners what your day-to-day looks like? When do you get a patient referred to you, and then what do you do with that information just so they can understand. To Andrea's point, maybe they've heard some negative information about people who work in this space, and nobody's perfect, but I think everybody working in this space is well intentioned and has a big heart and is trying to do the best with the difficult situation. But what does your day even look like?
Dr. Katie Johnson
For sure, it varies a little bit depending on where you practice and what the practice looks like. Child abuse pediatrics has been a board-certified subspecialty with the American Board of Pediatrics for the past 10 or 15 years now. And across the country, we have programs medically based, like here at Mayo Clinic, we’re a medically based, children's advocacy center and we take calls, consults 24/7 here, some programs are daytime only call, for any concern of maltreatment, whether it's physical abuse, sexual abuse, neglect, psychological maltreatment or medical child abuse, as we call it.
And the process for each type of maltreatment looks different, but it can be a medical provider calling us. We often sometimes work with child protection or law enforcement or even attorneys when they have questions. And in some way we can serve as almost a medical translator. This is what all this means, and this is what it would mean in your sphere.
When it comes to physical abuse. We are recommending workups. We're doing consults in the hospital. We're seeing patients sometimes for foster care visits when they're entering into foster care. For sexual abuse at the Child Advocacy Center, we're observing child forensic interviews. We're offering testing and exams, although we're really trying to get the message out there that it's really more about the disclosure than the exam. The exam is almost always normal.
And when it comes to medical child abuse, we often serve as the coordinator communicator among the health care team, trying to get make sure all the doctors and medical providers are talking to each other, understanding each other. We can help with kind of a detailed record review so we can tell, is this unnecessary and harmful or potentially harmful medical care at the instigation of a caretaker? Or is this something where maybe an adolescent reporting most of their own symptoms or it's, suboptimal interaction between the caregiver and the health care system but it's not really that fabrication, exaggeration or induction. So we go with education in sorting those concerns out.
Dr. Denise Millstine
Awesome. Thank you so much for giving us all that information. I'm hoping that at this point, the three of us can really hammer out some of these terms, because I'm guessing many of our listeners are new to this topic, maybe don't even know it exists. Or like you said, Andrea, only know from exposure to some more Hollywood presentations. So maybe, Katie, I'll go back to you because you just made a clarification. So we're talking about Munchausen by proxy, which is also called medical child abuse. So will you just define that as a topic.
Dr. Katie Johnson
Yes, medical child abuse, the definition is unnecessary and harmful or potentially harmful medical care at the instigation of a caretaker. And it's kind of an umbrella term that does not take into consideration the motivation of the caretaker but is an umbrella over things including Munchausen syndrome by proxy. And it also includes the very, very anxious caregiver that is not reassured by medical providers to the extent that they may exaggerate or seek second or third or fourth opinions and insist on testing, that results in medical harm. So medical child abuse is more the umbrella term, and it includes Munchausen syndrome by proxy.
Dr. Denise Millstine
So Andrea, Munchausen syndrome is different than Munchausen syndrome by proxy. Do you want to tease that out and also factitious disorder and disorders of delusions, which you comment on in the book as being all very different things.
Andrea Dunlop
Yeah, correct. It's such a nice, relaxing experience to have Katie be the professional that just explained all of that, and I can just jump in with my two cents. This really gets to one of the most common misunderstandings about Munchausen by proxy abuse.
Because, as Katie alluded to, medical child abuse and sort of over-medicalization and that term, can happen for different reasons, right? People can harm their children because they're anxious. That doesn't mean that that behavior shouldn't have an intervention, right? Because there's harm to the child. However, the intervention is going to look very different if it's a parent who's genuinely anxious or a parent who is suffering from delusions, that's usually pretty obvious. You know, if someone is in a full sort of postpartum psychosis kind of state or something along those lines, you're going to treat those situations very differently. And those are, frankly, a lot easier to deal with and more straightforward to deal with than Munchausen by proxy abuse, which involves deliberate deception.
So it's really important for people to know that although there is a DSM diagnosis associated with this behavior, which is factitious disorder imposed on another right or factitious disorder, if someone's doing these behaviors to themselves, it's primarily a form of abuse and we need to focus on the harm to the child, because people who engage in Munchausen by proxy abuse understand right from wrong. They are doing it knowingly. It is usually extremely planned and executed over a long period of time.
There are cases where they're caught on video tape, you know, suffocating their child and then telling the doctor that that child had an episode or had a seizure after they were being suffocated, or they find medication in the mom's purse, or there's something like sort of a smoking gun.
And I will say, even those cases are still extremely complicated and difficult to hold perpetrators accountable. But that's also like not the majority of the cases. So usually it is really, you know, as Katie was talking about in that medical record review. Right. That's where you see that pattern of deliberate deception. So you see parents doctor shopping, which is different than seeking second opinions. And I'd love Katie to weigh in on that one.
And like lying about test results or fabricating symptoms that don't match up with like pictures of the child that day or even video of the child that day. So it's like this very, very lengthy process of really going through all the documentation and seeing if there is a pattern of deliberate deception or, okay, is this parent just in some kind of psychiatric distress or they're just very anxious. And so I think it's really important that people know that though, there is this sort of mental illness question, it's not in the variety of mental illness that makes people not culpable for a crime.
Dr. Katie Johnson
Well, I'm happy to talk about the second opinion versus doctor shopping. Yeah I hadn't really thought about that distinction until you mentioned that, but the way I would make the distinction is everyone has a right to a second opinion, and we're completely fine with that. And when it becomes third opinion, a fourth opinion, and we're always latching on to the opinion that is escalating care, whether that is another referral or a lab test or a surgery or a medication or some sort of kind of fringe medical practice, that's when it becomes more of an intentional escalation in medical care, potentially medical harm.
Dr. Denise Millstine
All right. Let's talk about the book. So there's three cases in the book. And Andrea, on your podcast you've talked about many more cases. But the three cases in the book are Hope, Brittany and Mary. Andrea, do you mind just giving a quick capsule for our listeners who haven't yet read the book to understand how these three cases are slightly different and where they overlap.
Andrea Dunlop
Yeah, absolutely. And, you know, part of what the book is really about is the career of my coauthor, detective Mike Weber, who is also an early collaborator on the show and really was the genesis for the podcast. I was watching him present with Sheriff Waybourn, who is the adoptive father of the victim in the second case we talk about, is Brittany's daughter. You know, watching them present about Brittany's case and that the first APBSAC conference that I went to, and APSAC is American Professional Society on the Abuse of Children.
And I just thought, oh, this story is so moving. This is the kind of story that can sort of get people to recognize the impact that this really has. And so these were some of Mike Weber’s first Munchausen by proxy cases and he'd been a crimes against children detective for a long time. But then he sort of, you know, became this expert because he just was willing to work on these cases and a lot of people didn't want anything to do with them. This is kind of how he describes it.
The three cases that we talk about in the book, Hope Ybarra, which was the first case that I covered on the show, and that was so impactful for me because that was the first time that, you know, my very first interview that I ever did for the podcast, I really was so incredibly green.I was not a journalist coming into this, was with Hope Ybarra's younger sister, Robin. And so that was my first chance to, like, meet a family that had been through the same thing that my family had been through. And there was all of these parallels with my sister's case. And so Hope Ybarra, it was this incredibly smart person who was very accomplished in her career, and she ended up perpetrating not only on her children but having this lengthy cancer hoax that just really was sort of so extreme and sort of cinematic, you know, thing of her jumping out of a plane when she was in remission. And so that's just kind of an incredible story. And that was Mike's very first case that he took all the way to, all the way to, you know, charges and then and then a conviction.
And so the second story we talk about is that when I kind of alluded to, which was the Waybourn family story, and of Alyssa Waybourn and her mother, Brittany Phillips. And this story really illustrates for me, I think, because my own sister was very smart and because, you know, Hope Ybarra was really smart and I sort of had this perception that these perpetrators are masterminds. You know, some of them are incredibly smart and present well and really get all of this access to power. You know, the case we most recently covered on the show, this person worked for a high profile rare disease organization for 13 years and really built up this entire career off of telling the story of her son.
And so you do see some of them like that, but they're not all like that. Brittany certainly wasn't. And what that case really illustrated to me was actually that this abuse is very easy to pull off. We are so ill equipped to deal with it that this is a form of abuse that it's probably easier to get away with in almost anything else and so that is obviously an alarming revelation. But so that was a really interesting sort of study in contrast.
And then, you know, The Mary Welch story, this is a story of that was the one that we included where the perpetrator was not brought to justice.
That story to me just was a really interesting kind of zoom in on, on the legal system. And I, you know, I didn't have any experience with or understanding really of the criminal justice system before I got into this work. And I think people don't realize how much comes down to just people making these individual choices.
And my sister was investigated a second time for her younger child, and there was a two-year long police investigation, and there was all this evidence, I covered it on the show, and a prosecutor just decided not to charge. And that's just a decision they can make for all kinds of reasons, right? Sometimes it's because they really don't think, you know, there really isn't evidence of the person did it.
Sometimes it's just not something they want to pursue. It'll be too expensive. It's not politically expedient. All those things. So I think, you know, really like these cases all sort of personally resonated with me for one reason or another. We chose these three cases because we felt like they really illustrated kind of some key points about this abuse that we hope people will understand.
Dr. Denise Millstine
Hey listeners, we hope you're enjoying this episode of “Read. Talk. Grow.” If you find our discussions helpful and insightful, please take a moment to subscribe to and rate “Read. Talk. Grow.” on your preferred podcast platform and don't forget to tell your friends to listen. Your support will help us reach more readers and those eager to learn about health through books. As always, feel free to drop us a line at readtalkgrow@mayo.edu with suggestions for books, topics or any comments. Thanks for listening.
Dr. Denise Millstine
I really appreciated that each story had its own arc to it, and none of them were clean, but they were all not clean and straightforward in different ways, which was really brilliant how you put it together. Katie, I'm sure a lot of the story's components were components you recognize. They were familiar to you in your work, and I just wonder if you'll comment particularly about the medical details, if there are some common or frequently used components that you tend to see in medical child abuse.
Dr. Katie Johnson
Yes, we’ll see involvement of the subspecialties. Neurology, gastroenterology. It can really span all specialties, but those in particular that rely on a reliable history from the caregiver. What surprised me about the Hope Ybarra case was the kind of fabrication of cystic fibrosis, because the biggest question I had throughout that is, or how was that faked?
But it's revealed in the book kind of how that came about. But I thought that was really fascinating. And the other thing that really, I have to say, stood out to me when you were commenting on the legal system was the jury selection. I thought it was a really great example, though, of privilege, gendered assumptions and things like that, and the variability that can happen in how these cases are carried out outside of the medical piece of, you know, I see one view in the medical world. But I think the book was really nice at putting my eyes to kind of what happens on the other side on the family side, and on the legal side as well.
Andrea Dunlop
Well, and if I can just respond to that, I mean, Katie, I love that you said that, you know. Yeah. Your focus on the medical piece and I think one of the things that drives me nuts, so child abuse doctors really get presented as the people who are making all the decisions. Right? You would think they were judge, jury and executioner for reading these pieces. You know, you hear these sort of like medical kidnaping and oh, this doctor just separated this child. It's like, oh, there's so many more steps you have to go through for any of that to happen. And it has to go, you know, through the child protection apparatus and to a judge who has to sign off.
Dr. Katie Johnson
There's also this picture often in the media of child abuse, pediatricians are going to always see abuse. And what we know from the literature and experience is that about half the cases that come our way, we end up saying, yeah, that's that's pretty concerning. We should look into this more. And the other half we end up saying, actually, you know, that injury makes sense or that's kind of a nonspecific behavior, it doesn't mean [unclear] that they've been abused. But, you know, we don't hear about those because they don't make it to court or to the media. And so that's one important thing, I think, to know about the practice of child abuse pediatrics at all. Another important thing that pertains to our work in medical child abuse cases is more often than not, we're serving as that coordinator collaborator to make sure that we're getting a full picture with the whole medical team about what's going on. It's not this, you know, doctor in the background that comes in and makes an independent assessment. It's organizing that information from the doctors that have been interacting face to face with the patient family, usually for years.
Dr. Denise Millstine
Well, in one of the cases, it's so heartbreaking. One of the children actually has a procedure in their brain based on the report of the mother that is never verified by the neurosurgeon or the specialist who places the shunt in this child's brain. And I would imagine, Katie, that this is the type of situation where having somebody like you on board would confirm that there is documented, clear evidence before you take this step, as opposed to taking the history directly from the parent, which as pediatricians, for so much of the child's life, you have to do because they're the ones who can verbalize. Can you just speak to if that's accurate or not?
Dr. Katie Johnson
Absolutely. And it makes me think of g- , or gastrostomy tubes, because that's one of the most procedures that children will have, in these cases. And so that's a tube that goes directly into the belly and can deliver nutrition. And it's a surgery. Seattle Children's actually has this really great process and protocol by which they evaluate who objectively needs a g-tube and who does not. And they found that that's actually pretty effective in making sure that we're not bringing these in unnecessarily, because you'd be surprised how someone can get an unnecessary surgery with the right fabricated history.
Dr. Denise Millstine
And I always just wonder, is it the doctor moving too fast? And my heart really breaks for these doctors recognizing that this was a mistake they made because clearly they were trying to do something in the best interest of the child and being fed, intentionally fed erroneous information to make those decisions. Well, Andrea, your title and the depictions in the book are really focused on mothers, which we have learned can be the most common perpetrators of medical child abuse and also probably why it's hard for people to recognize that it's happening because nobody wants to think a mother would harm their child. Can you talk about how that role specifically has made an impact on Munchausen by proxy?
Andrea Dunlop
Yeah, absolutely. And this is something that I think about probably every day. And so, yeah, what we know about perpetrators of this abuse is that over 96% of them are women. And, you know, my take on the reason for that is not because it's something specifically in the female brain that makes people do that. It's because women are the people who have the opportunity, you know? And as my colleague Dr. Mark Feldman always says, it's a crime of opportunity. I think it's really interesting to think about people who are pathological liars and who are manipulative and deceptive in this way.
They lie indiscriminately about work, about personal relationships. You know, you see a lot of affairs. You see a lot of just made-up stories of trauma, right? Being assaulted or robbed or, you know, sort of being the victim of these crimes that never happened. I mean, you see so much of that in this case. So it's all this really, really pervasive pattern of deception.
And men engage in these behaviors, too. It just looks different, right? Men just tend to lie about different things. I think it's, it's really heavily influenced by how we see motherhood, because it is this sort of perfect thing to hide behind.
Right? Because I think you have very messed up ways of looking at mothers, which I think anyone who is a mother probably has experienced on the one hand, we sort of really put motherhood on a pedestal. And at the other, on the other hand, we don't treat it like it's a worthwhile endeavor. We don't support it.
We don't have any federally mandated paid maternity leave. We don't, you know, we just really don't offer our mothers as much support at all, just sort of full stop, right? And so we have this very, you know, sort of messed up relationship with motherhood. And I think that that prevents us from seeing this abuse. And I think what I've really come to appreciate after years of reporting on these cases is, you know, we sort of a lot of times in the literature it's identified as being a behavior that's meant to elicit attention and sympathy.
And those things are certainly present. But I've also become really fascinated by how it's really about power. Right? It's about having power over other people. It's about feeling powerful by pulling one over on doctors, you know, who are far more educated maybe than you. It's about, you know, having power in sort of your community, right? And getting media attention and like, and sometimes about, you know, getting a job in a powerful organization.
It's like it's really about power. And so I think where do we give women access to power in our society? Over children, right? And that's kind of the only place we give women unquestioned power. So I really think that that's that sort of more explains the gender dynamics than, than anything else. The reason I think it's the motherhood makes a perfect screen is because it really violates something visceral to think about a mother harming their own child.
Many of these perpetrators are, you know, again, not all of them, but many of these perpetrators are very adept at looking like a caring parent. You know, the most caring parent, right? The most apparent that would sacrifice everything. And they quit their job to be a caretaker, and they move out of state to be a caretaker.
And they do all of these things for their for their child, and they get other child and Make-A-Wish support. Poor Make-A-Wish just ends up in every one of these cases and is doing all of this for, for their child. And so that's sort of how you see mothers. And then that's going to be hard to break through. And then as Katie kind of alluded to, right, you have a rightful correction in sort of believing women about their own experiences or not treating women full stop like they're not reliable narrators. And you people can have a very strong reaction to that. Right. And so but of course, not all women are telling the truth. Women are humans, and humans have a full range of behavior, and women have the same full range of behavior and capable of evil behavior, unfortunately, is.
And that's my my feminism. I guess women can be just as evil as men.
Dr. Katie Johnson
When we talk about child neglect, if you think about what's expected of a single father versus what's expected of us, we find that people are a lot quicker to call something neglect when it's a mother. And so that's kind of this other gendered way that we looked at sometimes people's ability to maltreated or neglect a child.
Child abuse often contains medical neglect. There's an overutilization of inappropriate care and an underutilization of appropriate care. And that underutilization is the neglect for the older patients, the adolescents, a lot of times it's, psychological or psychiatric support.
Andrea Dunlop
Yeah, that's a great point, Katie. And I think that's why, again, you know, it's talking about the beginning that we've sort of started using this term Munchausen by proxy abuse, because although the medical piece is often the piece that sort of comes to the fore, and that is obviously the most likely to be life threatening, you also seen other forms of abuse and psychological and intense psychological abuse.
It's emotional abuse. It's educational abuse. You know, they're often being pulled out of school for long periods of time. And we just sort of see these, you know, now that we have more survivors in the community, they're sharing their stories. You know, you often just hear things like they weren't taught basic hygiene and they're just they're not they're really not being taught in any sense of the word how to take care of themselves, because the point is not for them to learn independence.
You know, most if, like, I have a six year old and a three year old and my daughter is off and she's in first grade and they're sending her out into the world and like, you sort of see, like, oh, you really have to like the job of being a parent is to teach your kids to survive without you.
And so when that's not the goal, it is this, like just profound, profound, abusive neglect that actually is completely separate from the medical side. And we do see Munchausen by proxy abuse that doesn't lean so heavily on the medical side, but is really more about sort of pulling kids out of school and convincing them that they have something really wrong with them, and that they'll never lead a normal life and they'll never be able to be independent and attempting to take their rights away once they're adults. So like, that still fits in. That still very much fits in the in the spectrum of Munchausen by proxy abuse.
Dr. Denise Millstine
It occurs to me, too, that there is a lot of physical abuse, because so many of these cases involve feeding and the withholding of food and hydration from these kids, and that is a very physical type of abuse as well. Katie, the book also highlights several different women who are perpetrators of this type of abuse. Is there a type of person that you see in this role?
Dr. Katie Johnson
Yes. As Andrea alluded, you know, it's over 90 and 96% women, often mothers and typically biological mothers. The demographic that we tend to see tend to have a few things in common. Not always, but often, they tend to really enjoy the spotlight, whether that’s some attention on social media or a caring bridge or a Go Fund Me, a Make-A-Wish, or, they really like the attention of medical providers and seek that engagement.
And they may have so much exposure in the medical field or some sort of medical background, whether they're a nurse or a nursing assistant, that they are very familiar with medical jargon and kind of very savvy in that way. And then, as I said, kind of regarding enjoying the spotlight, there's also tends to be a heavy activity online, about a blog or a page that's completely dedicated to kind of their life. So those are some of the consistent features we see among specifically perpetrators of medical child abuse.
Dr. Denise Millstine
Thank you for that. Okay. I want to end on a brighter note because this is such a heavy it's important topic, but it is a heavy and difficult topic. Can you both talk about what the future looks like and whether there is hope for Munchausen by proxy abuse?
Dr. Katie Johnson
I can tell you what I wish, for this field and we are starting to see some hospital systems. UCSD is one that published on this, having kind of organized systems for these consults, for tracking them, because it's currently not well reimbursed. The, you know, innumerable amount of hours that go into these chart reviews. And it's why Investigator Weber is one of the only people doing these investigations.
And so I think if we can advocate for one, for people to understand and see the prevalence of this type of abuse and therefore recognize that it needs some funding, some time, some FTE. And I also hope for better coordination, communication, not just within health systems, but between and I think with medical records, we're starting to see some of that.
And I hope even more so we'll be able to, you know, communicate across health systems because there's this dance that we do with HIPAA. We want to protect patient privacy. We also want to safeguard children and make sure that we're communicating about continuity of care. And so I hope we're seeing more in that direction.
Dr. Denise Millstine
Thank you.
Andrea Dunlop
I will say it can be hard, especially in this climate, to feel hopeful. Right. We have we're up against some really big headwinds. And I don't think it does anybody good to pretend otherwise. We're in the middle in this country of a massive anti-science backlash. I think that is part of what's fueling this conspiracy of medical kidnaping. Which of people are so lucky to have never come across that term is a conspiracy theory that doctors like Katie are just snatching children away from their parents and keeping them in the hospital just for reasons of fun and profit. And if it sounds like I'm being glib in that description, I'm not. That really is what it is. And, you know, we saw this like, massive case in Florida. And there's, you know, several other court cases that are under way. So it were certainly up against a lot. But with that said, I will say the thing that gives me hope is that individually, in each of these cases, even the ones that went really badly, you know, I've seen people be very brave.
I know when doctors encounter one of these people and they know that if they're the person that holds this person accountable, they're going to be the target of that person that they're going to, you know, could end up in a lawsuit. Like, I know doctors at this point know that that's the case.
And you still see doctors standing up for those kids. And I will say that I believe that my niece is alive because of the doctor who intervened in her case, and that doctor was totally excoriated in the media. And I have talked to so many people and survivors who've been through cases who are alive because the doctor intervened and who remembered for the rest of their life that that doctor thought their life was worth taking a risk on.
And that never leaves people. So I guess that's kind of my hopeful thing to say. If, you know, we have a lot of folks listening in the medical profession or, you know, or elsewhere of just children are worth the risk. And I think people I think there are a lot of people I have to believe there are a lot of people that agree with that.
Dr. Denise Millstine
And that is so beautifully said. And just to recognize that other brave people in this space are people like Dr. Katie Johnson, and then you, Andrea and Mike for having the podcast Nobody Should Believe Me, and also for publishing this amazing book, which our listeners should go out and read, “The Mother Next Door: Medicine, Deception, and Munchausen by Proxy.” It's been my pleasure to talk with both of you today. Thank you so much.
Andrea Dunlop
Thank you so much, Denise.
Dr. Denise Millstine
“Read. Talk. Grow.”is a product of the Women's Health Center at Mayo Clinic. This episode was made possible by the generous support of Ken Stevens. Our producer is Lisa Speckhard Pasque and our recording engineer is Rick Andresen.
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