Medical Child Abuse: When Caregivers Deceive

In this episode of One in Ten, host Teresa Huizar engages in a thought-provoking conversation with Dr. Jim Hamilton, an associate professor adjunct at Yale School of Medicine, on the topic of medical child abuse. They explore the complexities of why caregivers might fabricate illnesses in their children, the significant discrepancies that pediatricians should look for, and the systemic issues that enable this form of abuse. Dr. Hamilton shares insights from his experience and research, including an innovative study using school nurses to understand the prevalence and detection of medical child abuse. The episode underscores the importance of early intervention, compassionate care, and preventing the escalation of such cases to protect children and support families. 

Time  Topic 

00:00 Introduction to Medical Child Abuse 

01:21 Dr. Jim Hamilton's Journey into Medical Deception 

04:19 Understanding Medical Child Abuse 

06:33 Indicators and Evidence of Medical Child Abuse 

09:52 The Role of Healthcare Professionals 

12:02 Complexities in Diagnosing Medical Child Abuse 

17:22 Systemic Issues and Parental Influence 

25:10 Legal Challenges and Case Studies 

26:14 The Chilling Reality of Medical Child Abuse 

27:16 Prevalence and Study Design Insights 

27:52 Understanding Medical Child Abuse: Rare or Not? 

31:15 The Role of School Nurses in Identifying Abuse 

36:04 Study Findings and Surprising Results 

43:00 The Importance of Early Intervention and Compassion 

51:40 Final Thoughts and Future Directions 

Resources

Prevalence of Suspected Medical Child Abuse in the School Setting: A Study of School Nurses - PubMed

Transcript

Teresa Huizar:  Hi, I am Teresa Huizar, your host of One in Ten. In today's episode, Medical Child Abuse: When Caregivers Deceive, I speak with Dr. Jim Hamilton, associate professor adjunct at Yale School of Medicine. Now medical child abuse lives large in the public imagination. Films made for tv, movies, and books have all told the story of the mother, and it is often a mother who fabricates or manufactures an illness in her child. 

Too often these stories spread really more like myths than reality, not because medical child abuse isn't real or isn't serious, but because they miss how these cases arise and how they might be prevented. Why would a parent subject their children to unneeded treatment in the first place? What signs can pediatricians and other medical professionals look for to avoid being made unknowingly complicit, and most of all, what can be done at the very earliest stages to prevent these tragic cases in the first place? I know you'll find this conversation as thought provoking as I did. Please take a listen.  

Hi Jim. Welcome to One in Ten.  

Jim Hamilton: Glad to be here. Thanks for having me.  

TH: So I'm curious about how you began being interested in medical child abuse. We'll get into the study in a minute. What interested you about the topic?   

JH: Well, I became interested first in the general idea of medical deception. People who had unexplained medical complaints, people who seemed to be engaging in the healthcare system for reasons that had little to do with restoring and maintaining their health.  

I was training at the University Hospitals of Cleveland, part of the Case Western Reserve Medical School and was doing a lot of, I'm a psychologist, but I was interested in health psychology and behavioral medicine, and I was doing a lot of work on the inpatient units. When the doctors had a patient that was confusing or puzzling to them, they would ask our team to send somebody up and speak with them.  

And I remember speaking to a woman who, she was in her late fifties or early sixties, she had been a prominent African American businessperson. Her husband and she ran an important business in Cleveland. Her husband died. She was unable to keep the business going and she ultimately had to sell it. And both her relationship and her sense of meaning and purpose were lost.  

And that vacuum seemed to have gotten filled with her status as a patient.  It was what she did. It was how she had relationships. It was, it gave her life meaning and purpose and structure. And that's where it started. I became very interested in factitious disorder, factitious illness behavior. So people who were, their mind wasn't tricking them into thinking they were sick. 

They had been pulled into the sick role and were sort of more or less doing it on purpose, although it's something that we rarely admit to ourselves or admit to others.  And in 2008, I started doing consultation work. In this world of factitious disorder, there were many more people who had concerns that a parent was exaggerating or fabricating the illness of a child than there was adult cases, because, you know, no one's being harmed in the adult cases except the adults themselves. 

And whatever harm comes from deceiving your doctors, which is considerable. But the referrals were, you know, nine to one or ten to one favoring medical child abuse cases. And a colleague who, I happened to live in Alabama as well, I started this when I was a professor at the University of Alabama. 

He lived in Birmingham and I lived in Tuscaloosa. And we got together and he mentored me through my first cases, and that's how I learned how to do the evaluations and how I became fully engaged in thinking about and worrying about children who are being medically abused.   

TH: So for our listeners, most of whom are child abuse professionals here in the US but we do have our international listeners as well, and they may not be terribly familiar with the term medical child abuse. 

Can you, just as a matter of level setting, when we're talking about medical child abuse, what behaviors are we specifically talking about and you know, how does it raise to the level of abuse? 

JH: I am glad you asked about specific behaviors because you know, oddly for medical child abuse, the specific abusive behavior seemed to get lost in the sauce. 

When you mentioned terminology, it was triggering because the terminology problem and debate in our field is terrible. I'm sure your listeners will be immediately familiar with the term Munchausen Syndrome. If we have time, we can get into some of the reasons why it's important to maintain. The idea of Munchausen by proxy abuse.  

People who have been victimized in the most serious cases see that particular pernicious kind of long-term pervasive exploitation of them by their parent as something that needs to be recognized and set aside. Specifically the term medical child abuse encompasses people who are exaggerating, fabricating their children's illnesses engaging in excessive and unnecessary care for them for some reason other than the maintenance or restoration of the health of the child. I prefer to use that term because the alternative is often to allow people to become preoccupied with a mental illness in the perpetrator. 

TH: Oh, I see.   

JH: So when we start talking about Munchausen by proxy as a diagnosis, there is no such diagnosis in the DSM and the ICD. It's called factitious disorder imposed on another, but it's extremely difficult to support in court. It's extremely difficult to convince people that you can make determinations about such things without in-depth interviews and psychological testing of the perpetrator. 

All that is a distraction. Your question was fabulous. Let's get right to it. Like what are the indicators of this?  

And so the indicators of this are subtle, and there are many and various.  And one of the things that I want to communicate in my time with you for your audience is the danger of using physical abuse templates or sexual abuse templates. 

Or neglect templates to understand medical child abuse.  Those templates are very much, especially physical abuse is event oriented.  So the abuse is found in the event, but in medical child abuse, the event, even if it's a dramatic event like smothering your child or poisoning your child, misses the point. The abuse is in the story.  

People who medically abuse their children, especially the ones that rise up to this level of medical Munchausen by proxy abuse, where it is extensive and pervasive, defines the life of the child. The abuse is in a narrative that the perpetrator is trying to create and maintain, and that narrative is built very slowly.  

In a way that people who are specialists in child sexual abuse will recognize as sort of a selection process, a grooming process, et cetera. But that process is applied by the parent, and it operates on healthcare professionals.  The child is the victim.  But in this narrative, in this story of a loving mother, usually heroically caring for the sick child.  

The child is a prop. The child isn't even a character. In this narrative, the child is used as a way of creating this image of the mother, as you know, beset and victimized by their child's illness and in need of compassion and various other benefits that the sick role brings.  And so what are these events then? 

If they're not big, you know, dramatic events like smothering and poisoning, what are they? Well. There are a number of categories, the first that usually appears in the records of these children as you look at them from birth to the point where suspicions arise.  The key events are inconsistencies between what the parent is telling the doctor and what the doctor sees.  

So this might be unrelenting coughing, and the child doesn't cough during the daytime or vomiting and diarrhea of such a frequency and duration that the child should be dehydrated, but there's no signs of dehydration in the child.  So there's a discrepancy in the data to be reconciled.  And most in these cases, at least, the doctors who are part of this progression from a few troubling symptoms to a chronically seriously dramatically ill child, start with their failure to really reconcile those discrepancies right off the bat.   

TH: It's interesting as you're talking, because there's this gaslighting process that's going on the part of the parent toward the medical professionals, right? In terms of describing non-existent symptoms. And other kinds of things. And in a way, to use your analogy, they get pulled into becoming supporting cast in this narrative. A theatrical performance.  

JH: That's exactly right. And they are selected when people who only know a little bit about this problem, one of the signs they think is really important is doctor shopping.    

That they go to one doctor and that doctor doesn't give them what they want and they go to another and they go to another. 

And we rarely see that. We see a little bit of it. And often what really does constitute a sort of doctor shopping process is unrecognized.  Because the parent will bring the patient to a pediatric practice, and within that pediatric practice, there'll be multiple doctors. And at first the parent might not care which doctor they see, but eventually they'll find one who seems to be responsive to their flattery.  

Seems to be responsive to their opinions about what's going on more seriously than the other doctors.  

TH: More credulous essentially.  

JH: Yes. And so you look at the medical record and say they've only had one pediatric practice, but actually they've, in the early days you can see them selecting and you know, if you look at the telephone records of their interactions with the practice, it's like, I need to see Dr. So-and-so. I only wanna see Dr. So-and-so. And just as these parents often have poor attachment, they have a need for connection.   

Doctors are human beings too, and they vary in their need for approval and the need for belonging. And the need for connection. And there are some doctors who, when they're told, you're the only one who's listened to me. 

I've gone to this one and that one, and you're the only one who seems to care, and why can't all doctors be like you? It's a powerful thing. So what happens is in terms of what are these bits of evidence we're looking for, it starts with the unreconciled discrepancies between what the child looks like and what the parents say. 

You can add onto that, like typically effective medicines like inhalers or anti-acid medicines for GERD don't seem to be working.  Why don't they work in this child? These are very effective. Why aren't they working in this child?  And instead of questioning whether the mother is being truthful, they look for some more complicated medical explanation for what's going on.  

So the pediatrician will make a referral to a gastroenterologist.   

And then especially in the United States where we don't have very good coordinated care, you get fragmented care, you get a child who goes to see a GI doctor and a pulmonary doctor and an ENT doctor. 'cause maybe it's something having to do with swallowing. 

Their coughing might be GERD, it might be swallowing, it might be GI. There's a number of things. They get swallow studies, et cetera. And in the process of all that, often one of those doctors becomes the new sort of hub of the wheel, the new primary care specialist. You start to get these adjacent referrals.  

Where the specialist is making other specialist referrals that the primary care doctor may or may not be aware of. And then the case literally gets too big to be fully understood, and the case gets too complex for anybody to believe that this is all a house of cards.   

TH: Oh, that's interesting. The sheer complexity of drawing in all of these other people and all these unexplained or not sufficiently explained symptoms. 

That itself is kind of like reifying. Because people go, well, this is so complex and must be real as opposed to going, it's so complex, maybe it's not real.  

JH: Yeah, exactly. And that's what, you know, at my core, I'm a psychologist. There are two processes going on. There's the estimate of how likely it is for somebody to be really dramatically puzzlingly sick.  

And, and the more dramatically and puzzlingly sick, the less chance it is of being real. And then there's this competing process, which is the more extreme the illness being fabricated, the less people are believing that somebody would make that big a lie.  

TH: Right. Oh, that's so interesting.  

JH: And so you find yourself in this odd place where people are more likely to believe a really unlikely medical scenario because people think, well, people wouldn't tell that big of a lie. People will tell a lie about their kid being sick, so they could take 'em to Disneyland, you know, on a long weekend or something like that. 

But people wouldn't fake having cancer.   

TH: You think, Jim, honestly, like for your average person, and I'm just gonna use myself for an example here.  I am a bad patient. I hate it. Like I hate going to the doctor. I don't like anything associated with it. Like the waits in the wait room and the waits in the, you know, the actual exam room and all the ins and outs of it, right? 

So for an average person, I think it feels a little unbelievable because they think who would sign up? For making repeat trips to sit in a waiting room for half a day or sit in the exam room in a paper gown for hours on end, or, you know, 'cause it's just like one irritation after another is the way that a person who does not have this, is not involved in it, thinks about the US medical system, basically, no matter how nice your doctor is or how competent they are. 

And so I think it's not just maybe why the general public has this kind of both fascination with medical child abuse, while at the same time thinking like, I can't even understand it. But it also might be that physicians themselves who know the system better than anybody also are sort of like, why would somebody come and sign up for a appointment every other week unless they actually needed it. 

I mean, they're paying copays, do you know what I mean?  

JH: Well, in most of these cases, they're not showing up for, you know, extra preventive care.  And in some cases you find that like oddly the parents aren't very good at making the scheduled well-child visits or getting vaccinations. 

'cause again, ultimately it's not about the health or wellbeing of the child, right? It's about the narrative they're trying to create. I try to convince physicians I speak with about this that like real people don't really come for that follow-up visit. Like, you know, I wanna see you back here in six months, but whatever it was minor and self-limiting and no one goes back.  

So the people who go back are more likely to be people who have sort of a, have developed some sort of excessive dependence on these healthcare relationships and they're being too good a patient in some ways. 

One of the things that we find is another sign that a parent might be engaging in medical child abuse is that they do not seem at all sort of uncomfortable, anxious, or fearful about putting their children through procedures.   

TH: Oh, that's interesting.   

JH: They tend not to say, do we really have to go through that?  

They tend instead to say, you know what about this? What about trying this?  

TH: Oh, so they bring up possible procedures or interventions?  

JH: Yes, and that's another category of evidence we look for when we do these evaluations of potential medical child abuse cases, is I refer to it as inappropriate influence. 

You know, we live in an age where parents and patients in the adult context are supposed to be involved in shared medical decision making, like, which is great.  But there are things that are the purview of the doctor and there are things that are purview of the patient, their values, what's important to them, et cetera.  

And in these cases what you see is parents crossing the line into suggesting a diagnosis and urging their doctor to give a diagnosis when it's not warranted by the evidence to which some doctors acquiesce.   

TH: You know what I was thinking as you were talking about that is that your job has gotten, and the job of doctors generally, has become so much more complicated in that regard by the fact that everybody thinks they're a doctor now because they have Dr. Google and they, you know, they're on WebMD or they're seeing an ad for something and the next thing you know, they're bringing that into the exam room, which I'm sure doctors deal with all day long every day. 

You know, to try to separate that out from what you were describing, which is like the most extreme form of that, right? Which is not only are you coming and going, you know, I have this thing on my knee or my kid's knee and I thought it might be whatever. To the point of going, this seems like a really serious thing. 

Shouldn't we intervene in some very intrusive way? So I'm wondering, is it like the intrusiveness of the interventions that they're suggesting or the seriousness of the diagnosis that they're suggesting that distinguishes it from the fact that everybody now thinks they're a doctor?  

JH: Yes. It's the seriousness. 

It's distinguished from medical literacy and medical knowledgeable-ness by its pushiness.  

So if you were really, really medically knowledgeable and you brought your child in for, you know, maybe some in toeing of their feet. Popular in medical child abuse cases, some vaguely orthopedic, you know, corrective thing, the assessment and plan the doctor might mention that they had a long discussion about bracing and surgical correction, and you ask yourself as an evaluator of the medical records, why in the world would a kid who the parent was told has a like one degree in toeing on one leg? 

And because they're only like two will probably correct itself. Let time take its course. Why would they be having a conversation about bracing and surgery?  

And the answer is usually it's the parent who brought it up. A truly medically literate, medically knowledgeable parent, probably wouldn't go for a one degree in toeing. 

But even if they were being cautious and went, they would be reassured and say, yeah, that's what I thought too. We'll take a wait and see attitude.  But instead, there's evidence in the medical record that the mother pushed a much more dramatic response to this, making a bigger deal out of it than it had to be.  

And again, some doctors will acquiesce, some doctors will do something that I've come to call half acquiescing, right?  They hold the line, they say, well, certainly you're not gonna do that. But putting them in ankle braces wouldn't hurt.  

TH: Oh, I see.   

JH: And so it's amazing how many medical records I've read in these cases where the doctor essentially articulates the whole problem of what went on.  

The parent wanted this, I didn't think that was appropriate. I thought we should do this.  They literally say, what harm could it do?  

TH: So there's like a negotiation kind of going on,  

JH: Going on where, and there are systemic thing that sort of enable this process to occur, this developmental process of narrative building in the medical child abuse sort of situation. 

Things like, you know, doctors have to deal with patient satisfaction surveys.   

And I gave a talk at a prominent medical school that will remain nameless.  And I talked about all this, you know, terrifying stuff. And my job was to scare the hell out of the doctors so they would like take this seriously and get more preventive. 

And the first question I got was, what about, you know, how do we deal with the parent feedback?  Like we'll get terrible parent feedback if we do the things that you're telling us. They're absolutely right. It was a great question because I needed to get shook a bit about the realities of the things I was suggesting. 

It was a great question.  But it's one of many aspects of this for-profit, consumer driven healthcare system that helps to enable medical child abuse. And I mean, not to the point where, you know, these things are the leading cause of medical child abuse.  

TH: No, but you're saying it's another contributor to it if in the back of someone's mind, alright, they're worried that they're about to get a bad customer satisfaction or client satisfaction and that someway ties to their compensation or their evaluation or something else.  

JH: Right? And the thing is, in 99 out of a hundred cases, there is no harm in giving kids braces.  But if you give a kid a brace, who doesn't need one, now the kid is visibly like ill, injured or disabled to people in that person's world.  

And you know, I had a very sort of sad and terrifying case that started like that. And the mother essentially kind of convinced everybody that her child had cerebral palsy and she became an active participant in the local child cerebral palsy center and did the telethon and you know, all of these things. 

And this was the narrative playing out. And you know, there's also this sort of developmental thing within the medical community. Somebody thought these braces were necessary.  I'll assume that they were correct, and I'll go from there. So this is inappropriate influence thing. You see this a lot with parents seeking an autism diagnosis, and they'll say something like, well, the school won't give her these aids, these accommodations that she clearly needs, unless she gets this diagnosis or that diagnosis and the doctor like gives it, and somewhere it's listed as a quote, educational diagnosis.  So this is half-quiescence, right? You know not making the full diagnosis, but writing a letter saying they have autism. And now the person has their school is recognizing them as an autistic person. 

And on we go.  Getting back to your original question and the issue about events versus story making, people will focus on that smothering and say, here's a medical child abuse case, but it generally won't stand up in court if that's all you have. What makes suffocating your child a part of the medical child abuse story is the whole rest of the story. 

We've had many cases, experts who do this kind of work have had many cases.  Where the medical team and maybe the Child Protective Services, you know, had something on tape or they found something in the mother's possession, like a syringe full of something or other that would explain the child's symptoms. 

And they said, our job is done here. We have proved that this is a terrible mother who has been making her child sick.  And the mother will get on the stand with the help of her lawyer and say that they were about to discharge my child.  All of the doctors had let us down all of these roads. They were the ones who wanted me to get all these tests. 

They were the ones who diagnosed the child as this and that. I just did what they told me to do. And my child is now having all of these terrible symptoms and they're gonna discharge the child. And I thought the only way to get them to pay more attention or to save my child was to create this medical emergency.  

And if you go into court without the evidence of all of these little bits of information that built the story up to the point where this dramatic event happened, you're gonna lose.   

TH: Speaking of chilling, that whole story is very chilling. And I think, you know, one of the things that I found in the paper most disturbing is, first of all, you and your colleagues point out that, while there's been this assumption that this behavior is rare and you all set out to look at prevalence, it's not that rare folks.  I mean, speaking of things that are chilling, that was what was chilling to me. And I want to talk a little bit about this study, the study design itself. 'cause I thought it was ingenious how you decided to look at school nurses as a way of trying to figure out this prevalence question. 

And so.  Again, for folks who haven't read the paper, can you talk a little bit about that? About, you know, kind of why school nurses and the way you all set up the design of it, where the school nurses themselves didn't know exactly what you were trying to get at initially, and I think some of what you've been talking about is why, but can you tease that out for folks? 

JH: Yeah. One of the things that comes up again and again in the conversation about medical child abuse is that it's extremely rare. Some of your listeners may have listened very recently to the Preventionist Podcasts, part of the New York Times serial podcast series, and in that podcast, the topic of medical child abuse comes up Munchausen by proxy they call it, and they refer to it as vanishingly rare.  

They refer to it as vanishingly rare.  Because the only available studies which were done in 90 were done in the United Kingdom, and they relied on a very good method. No method is without its flaws, but it's a very good method.  They asked all of the pediatricians involved in their national health system to fill out cards on their patients and whether their patients were diagnosed with this, that, or the other thing. 

And over a series of years, they included Munchausen by proxy.  In the United Kingdom, it's called fabricated or induced illness. It's sometimes also called caregiver fabricated illness. But whatever they were calling it at the time, that's what they were about.  They found that the cases were vanishingly rare, but the denominator, the number they divided the number of cases by was every child in the age bracket of zero to 16 in the United Kingdom.  

Okay. And so like the people who know just too little about things like prevalence is, you think that prevalence is a characteristic of a disorder?  No, it's a characteristic of a disorder in a setting. It doesn't tell us much that kids, including kids who never go to the doctor don't have medical child abuse. 

The ones we care about are how many of the ones who go to the doctor and so while they're all enrolled in the national healthcare system, not every family, you know, brings their kid to the doctor five or six times a year.  And so those are extremely small estimates. Among other things, those studies didn't go around to all the kids who weren't identified by their doctors to see how many of them. were unidentified cases of medical child abuse. So we don't know how many kids in the denominator were unrecognized cases of medical child abuse.  So there's that. But suffice it to say those were good studies, what they told us was true, but they are not telling us the whole story. So there are a number of other studies, smaller scale studies that have been done in sort of.more complex cases. So kids who went to an apnea clinic, for example.  Kids who are brought in for seizures that are unresponsive to medicine, for example. In those populations that might be sort of the next level of the narrative building. Okay. It's recognized, and you know, I think there was one study that said something like a quarter or a third of their patients were suspicious for excessive, exaggerated, fabricated healthcare seeking.   

And so one of the reasons we picked school nurses is first of all, that they saw kids. They were asked to deal with kids whose illnesses were of sufficient complexity and seriousness. In order for them to be able to stay in the school setting, there had to be a lot of accommodations and a lot of interventions by the school nurses. 

The other reason why we picked that setting is that one of the most definitive signs that a child is experiencing medical child abuse is that their problems don't appear when they're separated from the person who's doing the abusing. It's called the separation test. And if CPS gets involved and there's been an explicit accusation made of medical child abuse, the people in charge might arrange a separation test, keep the child in the hospital, remove the parent from the situation. 

If it's done right, they'll change nothing but the presence of the parent.  

TH: Right. And to see whether the condition gets better. 

JH: Yeah.  

You know. What an outpatient doctor, a specialist, or a primary care doctor almost never sees is the child without their parent. The child doesn't generally speak in those meetings. 

You don't get to see the child in a prolonged way over a prolonged period of time.  And in cases of medical child abuse, it's often the school nurse who's like, I don't get this whole helmet, this whole seizure thing, like this kid hasn't had anything, even vaguely resembling a seizure or whatever the case may be. 

This kid doesn't have breathing problems at school. They don't have falling problems at school, whatever the case may be.  They get to talk to the kid and sometimes the child, you know, the parent is saying they can't take food by mouth. They da da da, and the child sees some kid with a bag of Cheetos and say, oh, I love Cheetos. 

We have those all the time at my house. So they have an opportunity to see the child unaccompanied by the parent.  So we thought there would be a good population to assess.  

TH: Well, let me ask you this, because the way that the questionnaire happened, if I'm remembering right, there's sort of a phase in which you were trying to generate interest in it, and so you all told the school nurses that they would be involved. 

JH: It was something like we're interested children's illnesses and how parents cope with them.   

TH: Right. Okay. So then you had a batch that evidenced interest in that, and then there's sort of a phase two where you actually told them what the study was actually about or what you were actually looking for. 

JH: Right, right. When we began, the crucial thing was that instead of asking general questions about the health and wellbeing of their kids and the parents coping, we told them, we think the best way to do this research is to, you know, we can't talk to all these kids, but we can have you pick out a kid, just randomly pick out a kid who meets these criteria. 

It has to be a reasonably sick kid that you've known and you have good knowledge of them  so presumably the kid they picked is random.  And if we get this random selection of selected kids.  That they picked before they knew the study had anything to do with medical child abuse. When later we asked them, are you worried about medical child abuse in this, in this child? 

And the student, the number of kids for whom those nurses said yes, divided by the number of kids represented across all the nurses would be an interesting way to estimate suspected medical child abuse in this school nursing setting.   

TH: What was interesting to me about it is that because you designed it that way, you were trying to, did avoid a certain selection bias, right? 

JH: Right. We got rid of all the selection bias. Right. So, you know, if you take sort of heuristic understanding why people engage in medical child abuse, which is to get attention, not always the case, but it's the case in a lot of them.  Well, if they're really medical child abuse cases, they're trying to get attention and they might be more memorable or stand out in the mind of our nurses. 

And even though we didn't tell them to pick a medical child abuse case, the sort of the attention seeking involved in that case might bring it to mind.  

So both of those biases would overestimate the prevalence.  

TH: So what did you find about this? Is it indeed vanishingly rare?  

JH: It is important for me to be clear that, you know, these were not cases that were extensively evaluated by an expert in medical child abuse. We simply ask them four crucial questions. There's wide agreement that the way medical child abuse is perpetrated is through one, exaggerations, two, fabrications, out and out lies about things.  

Three, like some sort of physical simulation, like you know, putting a brace on a kid that doesn't need it or putting blood in a kid's urine sample to make it look like they're having hemorrhaging in their kidneys or something like that. But that doesn't hurt the child directly.  And then induction, or direct physical harm to the child.  

So for each of those four questions, we ask them to rate on a zero to 10 scale, do you have any concerns that a parent has in the case of exaggeration, exaggerated this kid's medical problems for the purpose of making them seem sicker than they really are?  So it was not only the presence of that behavior, but with the aim of making the child look sicker than they really are.  And then, so we had these four questions, the suspicion ratings on these four questions. This is not a standardized measure.  These are simply the four things we look for when we're evaluating these cases. We didn't have any standardized, empirically validated way of saying where along this 11 point scale should we be concerned.  

So we said, well, let's you know. Chunk it up into the people who had zero or one level suspicions and the two threes and fours and the five, six and sevens and the eights, nines and tens.  And so publicly people are generally very disinclined to accuse people of faking things.  And so we thought, hmm, if they are certain at a level of eight, nine or 10,  they're really suspicious that there's something going on here that would be sort of, probably the minimum prevalence of this and across two different ways of measuring prevalence, which without getting into the weeds of what we did, it's about two or 3%.  Between two and 3%. 

TH: That's not nothing.  

JH: That's not nothing at all. And it's certainly way more than the one in a million estimates, right?  

You know, they're in that category, in the large prevalence studies that are referenced again and again in subsequent papers and in court arguments, et cetera. It's not one in a million in this very like, important population. It's almost 12%. If you take people who have a suspicion rating of two or above on any of those things. 

TH: Was there anything about your findings that surprised you?   

JH: One thing that surprised me in a wonderful way. These nurses, and these are sort of randomly, people just got this email about this study and said, yeah, I'll do that. Maybe they're slightly self-selected a bit for that, maybe slightly unrepresentative, but they took the time at the end of doing what I admit is just a torturously long survey. 

They took the time to write comments about this child, not only the ones they had suspicions about, but the ones that they didn't have suspicions about. And the Netflix School of Medicine has taught us something about medical child abuse in the Kowalski case. In the case of Gypsy Rose Blanchard, all of these famous cases that get on tv, I think the most important bit of information I got was the comments from the nurses, their nuanced thinking about what was going on in the case and why the parent was doing what they're doing  and shapes and types and tones of this problem that are well outside of the stereotype we have. You know, as public and among medically trained people and psychologically trained people about what these cases are all about. 

And they're not all about monstrous mothers, they're about people struggling, people overdoing it because they feel overwhelmed or you know, whatever. But the variety of the stories that they assigned or explained to us. About the people that they rated, like the lesson was we need to talk to more people like school nurses. 

TH: As you were saying that, I was thinking, just digging into those comments around what they believe the motivations to be would be so fascinating in and of itself completely. 

Aside from the prevalence, you know, exploration you were doing,  

JH: Right, but you know, what was impressive is the level of caring that their level of knowledge about the case.  Like they were very invested in these cases. They knew a ton about them. They had compassion for the child, certainly, but also compassion for the families. 

And they, through their explanations, I learned that we have to take a much broader look at this.  And that's consistent with some ideas that I've had about medical child abuse, you know, coming into this that were really sort of validated by what these nurses had to say is, we have to stop looking at this problem like a diagnosis. 

We certainly can't look at it as a psychopathology in the perpetrator because we don't have any data for that.  You get killed in court if that's the strategy that you take.  But beyond that. We've gotten to the point where we even thinking about it as a category of abuse, which certainly it is, and I'm not saying we should back off from protecting children in the sort of CPS legal frameworks that we protect other kids who are being maltreated. 

We should continue to do that.  But the best outcome in those cases is you rip a family apart.  The worst outcome is the kid stays with the parent and lives a life of an invalid or gets killed by accident.  Like those are pretty like grim choices, right? Grim, grim choices when your good outcome is breaking up a family.  

So my view of this thing is the only way we can fix this is by preventing it. So what keeps us from recognizing it, what keeps us from acting on it, et cetera. One is taking this very medically familiar idea of categorizing everything combined with our inbred social aversion to accusing people of faking things. 

And when those things combine to say, okay, I am going to need a lot of data before I cross the Rubicon. And say, this is medical child abuse and pick up the phone.  By that time it's too late. It's too late for the parent to get out of this in a face-saving way. It's too late to keep the child from having one of those terrible outcomes, et cetera.  

So what I'm starting to lecture on when I have the opportunity is that we need to start taking an earlier interest and a more compassionate interest in parents' illness behavior, the way they're thinking about managing and engaging their child in the healthcare system.  If we wait for people to develop into monsters and allow them the slack to do deplorable things, we're not gonna think about them compassionately. 

We're gonna say they're bad people. They should be thrown in jail, their child taken away.  But what if in those same cases, we took an approach of thinking about healthcare management, illness behavior, or illness behavior by proxy. I like to call it how the parent manages the healthcare needs of the child. 

What if we looked at that like the seventh vital sign?   

What if we look at it like pain instead of like malaria? What if we started thinking about the parent who seems too into this and coaching them out of it. We think they're just too worried about their children's health, but it's causing a little overdoing it and some of this inappropriate influence. 

Can you please do more to say, here's the problem, if we do more, like we're gonna get ourselves thinking that the child is sicker than they really are, and that's gonna be bad for them too. And here's what could happen. Here's the road they can go down and I'd like to not have your child go down that road.  

There's some people who are, hell bent in faking their kid's illness. And what those parents will do is they'll leave and maybe in the United States where we don't have a national health system to track people when they leave.  But what you won't be doing is you won't be giving the parent a chart with all sorts of unnecessary diagnoses and treatments and assessments that another doctor will pick up and have an easier time believing that this child is really sick.  

TH: Now, what you also might do is, you know, with many behaviors, once someone knows what they're doing, they stop, like, you know, a surprising number of people stop all kinds of things, just because they've been found out, even in a face-saving way, that they're sort of like, oh, they're onto me. And so you have to hope that for some number of parents that itself would be an intervention, you know? 

And a sufficient intervention.   

JH: But it's also a possibility at that early stage to frame this in a sort of a stress and coping context to connect the parent with social work or psychology or psychiatry. And so if we're worried that they have some need that's being met by their child being sick, if we act early enough and the parent is amenable enough and the doctor is aware enough about the sort of vectors and pathways by which people get into medical child abuse.  You know, they can, you know, if I were referred a patient like that early on, I'd say, well, you know, what do you do with your time? Like, who are you? What is your identity?  And you know, okay, this is a person who doesn't have much in their lives, and the role of parent to a seriously ill child is just waiting to take that spot.  

What can we fill that psychological space within this parent's life to make them less needful of their child being sick, make them less vulnerable to being sucked in by a sort of voracious healthcare system. So the other thing it allows us to do is it allows to think compassionately about the needs that the parent is trying to get met.  

You know, if the parent is less deplorable,   

TH: Right. You can have more compassion. Right.  

JH: You can have more compassion and the stories can become more accessible. And you can talk to somebody, I spoke to the folks at the MD Anderson Center. I like how their stationary now it says MD Anderson Cancer Center, but the cancer is scratched out. 

TH: Oh, I love that.  

JH: Yeah. It's fabulous. Anyway, you know, take people who have cancer, maybe somebody of your age, what if you get cancer and you have to pull back from your position and some of your able assistants step in and are doing a great job and you go through your cancer treatment and it's quite successful, et cetera, but you are now like, maybe you're out of your job.  

Maybe. Maybe the way your job works is it's hard to get back in at the level you were when you've been out of it for two or three years. Even successful cancer treatment can go on for a while, and knowing that that vacuum exists, why can't people at cancer centers, like from the very beginning, talk about, honestly, we're going to try to make this your life for a while, but  we're gonna do that to you, but then we don't want it to be your life forever.   

It's easier said than done, and a lot of people end up finding that, like involvement in their cancer-related activities is now what they do. Their friends might be a little bit wonky about talking to them because they, you know, don't know what to do or say, and all of these things that we can predict will happen.  

This person might become an exaggerator or a fabricator, or they might simply avail themselves of all the services that are available for cancer support and that's all they do with their lives. And that might be okay, but that might not be the decision they would make for themselves if they had another choice. 

If they were thinking about it and warned about how, you know, the amount of suction into the cancer patient role. The process is going to necessarily produce,  the analogy I gave them was that we have these conditions with regard to pain,  and we're gonna give them these addictive drugs and we're gonna tell them, you might get addicted to these drugs, but you really need 'em now.  

So we're gonna go ahead and get you addicted to these drugs. Do what we have to do, and then we're gonna get you unaddicted.  And it's the same thing. You know, you can't do cancer, right without it becoming, you know, almost all consuming.   

TH: What I appreciate about what you're saying, Jim, is the humanity of it, and I think that that's what's been hard to bring to these medical child abuse cases because they are often horrific by the time they come to the attention of child abuse professionals and there's not much recognized humanity left for the caregivers at that point because of what has gone on. 

JH: And well deserved, I have to say.  

TH: But I think this idea of prevention from the beginning is so powerful because you can intervene early and it's a gift not just to the child, although certainly to them, but also to the parent, to keep them from becoming this kind of person who would do more and more extreme things to their child for attention or any other reason. So I'm gonna give you a quick last word because I know you've got other things to go onto and I could talk to you about these cases all day. 'cause I think they're so, so fascinating and every aspect of them.  But if you could just sort of one final thing that you were saying, look, you may not get one of these cases in your career, but if you do, here's the one thing that I would just say if you suspected at all, do this, what would that thing be?  

JH: I think if I was talking to the doctors, the pediatricians, I would urge them to be suspicious as a compassionate approach to their case.  So when they have a kid where the parent says he's coughing all the time and he's not coughing, and he is running around the office not seeming to be short of breath, never has a breath sound when he comes in. 

And the mom's insisting that the kid's having breathing problems don't allow that inconsistency to go unreconciled.  Don't be the beginning of the story.  Say, boy, so now they're saying, oh, that it only happens at night.  Okay, say, I'm concerned about this child and I would like us not to go further until we were sure we understood this and, you know, get the hospital suits who pay the bills and get the insurance companies to say in cases like this, like a one or two night hospitalization where the child can be observed  to see exactly what's going on is going to save bajillions of dollars down the road that this child will use in healthcare interventions that are unnecessary if it becomes a full-blown case of medical child abuse. So I would say to them to not accept inconsistencies or contradictory evidence, to make sure everything's reconciled and to not trust the parent above all else.  

TH: Well, I hope that our listeners pay heed to that. I so appreciate you talking to us, in being so generous with your time and talking to us about what is a complicated subject, and we look forward to future studies on this. I hope that, you know, we further explore what it is that school nurses know and don't know about these cases.  

JH: Well, I hope to do that. There'll probably be another paper coming out about the specific characteristics of children to see how they map onto the kinds of things we've learned about medical child abuse through the forensic evaluations. But yeah, I want the takeaway to be hopeful that like, you know, thinking about this all the time and acting and getting to know with compassion why people might be doing what they're doing.  

It's actually, it's easy and it's way more effective and rewarding and happy than calling CPS 3 years into something like this.   

TH: Well, thank you so much and we'll keep tracking those papers and feel free to come back and talk about this again at any time.  

JH: Thanks very much for having me.  

TH: Thanks for listening to One in Ten. This is our final episode for season seven, and we'll see you right back here in January for season eight, where we'll be talking to more esteemed colleagues and researchers about the latest in research about child sexual abuse. In the meantime, please do listen to any of our other episodes or watch them on YouTube. And also, if you need more information about this episode or any of our other ones, please visit our podcast website at OneinTenpodcast.org.