Bonus: Unabridged conversation with Dr. Jayme Coffman
Cook Children’s: https://www.cookchildrens.org/
Munchausen Support: munchausensupport.com
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Transcript
True Story Media.
Hello, it's Andrea Dunlop, host and creator of Nobody Should Believe Me.
I am sharing a bonus episode with you today.
This is my full conversation with Dr.
Jamie Kaufman.
She is the child abuse pediatrician at Cook Children's, where both season one's case of the Hope You Bar case and the case that we're going to to be featuring in season two mainly take place.
Dr.
Kaufman is a child abuse pediatrician and the head of the care team, which is the child abuse response team at Cook Children's Hospital in Fort Worth, where much of our season one story and much of our season two stories take place.
Dr.
Kaufman is really such an incredible expert and she is just so down-to-earth and easy to talk to.
So I am so excited to share my full conversation with her.
You heard from her in a couple of episodes and there is a lot that didn't make it into the episodes.
So if you are interested in more content like this, we have a lot of it on our Patreon.
So go check that out there.
There are extended interviews, lots of just bonus content just from me.
And we have the complete interview with Hope Yebara.
And for many reasons, that one is not going to be shared on the main feed.
So if you want to check that out, please do.
If monetary support is not an option for you right now and you would like to support the show, rating and reviewing on Apple and sharing wherever you talk about podcasts is also very helpful.
We are hard at work on season two right now and hoping to share that in early spring.
I am really excited to share a whole new case.
There's going to be some familiar voices like Mike Weber in that season and lots of new voices as well and lots of new angles on this topic, as well as an update about my own story.
So please keep an eye on your feed and in the meantime, enjoy my conversation with Dr.
Jamie Kaufman.
If you just can't get enough of me in your ears, first of all, thank you.
I have a job because of you.
And secondly, did you know that I have a new audiobook out this year?
The Mother Next Door, which I co-authored with Detective Mike Weber, is available in all formats wherever books are sold.
It's a deep dive into three of Mike's most impactful munchausen by proxy cases, and I think you'll love it.
Here's a sample.
When Susan logged in, what she discovered shocked her to the marrow of her bones.
Though the recent insurance records contained pages and pages of information about Sophia, there was nothing about Hope.
Susan dug deeper and looked back through years of records.
There wasn't a single entry about Hope's cancer treatment.
For eight years, the Butcher family had lived with a devastating fear that their beloved daughter and sister was battling terminal cancer.
For months, they'd been preparing for her death.
But in that moment, a new horror was dawning.
For nearly a decade, hope had been lying.
Olivia loves a challenge.
It's why she lifts heavy weights
and likes complicated recipes.
But for booking her trip to Paris, Olivia chose the easy way with Expedia.
She bundled her flight with a hotel to save more.
Of course, she still climbed all 674 steps to the top of the Eiffel Tower.
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We were made to easily package your trip.
Expedia, made to travel.
Flight inclusive packages are at all protected.
When I see someone like you who's really willing to take on this issue and is creating an ecosystem that, you know, seems to be working so much better, your work means a lot to me personally.
And my intention with this podcast is, you know, we're following the Hope Yubar case and kind of doing that almost like true crime element of it.
But what I really want to do is get, you know,
round this out with talking to other experts about the issue and sort of in these like generalities, because as you know, people just don't understand this issue.
Right.
Well, it is a complicated issue.
It is complicated.
And
it's so many layered.
Oh, yes, lots of layers to the onion for sure.
Yeah.
It's complicated for medical professionals, much less laypeople.
Right.
So even the people who are, the professionals who are tasked with protecting children from it are not well informed frequently and sometimes not informed at all.
That's true in certain cases.
And even when you're well-informed, these are such entangled, complicated
medical kinds of situations.
And I think even for medical professionals, it's oftentimes hard to disentangle fact and fiction, right?
Because the perpetrators are so manipulative and have enough knowledge base that they're really good at putting enough truth with the fiction that it gets very difficult to differentiate sometimes.
Yeah, and I think, you know, something that I've heard that I think is a really good thing to remind people of is that
medical child abuse doesn't mean
that there was never any medical issue with the child.
Correct.
In fact, most kids do start with some sort of underlying medical issue.
And my personal opinion is that that's how the perpetrator finds out they like the attention.
And then when that problem starts getting better, they need something else.
And so I think that's where it escalates.
But they discover they really you know get a lot of positive feedback by being the superhero parent.
Yeah
so explain to me what the care team at
does.
That's an easy question.
So the care team is actually our child abuse program for our medical system.
So we have an outpatient clinic and we have a pretty big staff that's full-time, which we're very fortunate for that.
We don't have to do any general pediatrics or any other types of clinics.
So there's myself, I'm a board-certified child abuse pediatrician.
Soon we're getting another physician this summer.
I'm super excited about that.
We also have advanced practice providers, nurse practitioners in our case,
as well as sexual assault nurse examiners.
And so we all work full-time in this clinic, along with social workers as well.
And
we see children that on a scheduled basis for concerns of any type of abuse.
So it can be sexual abuse, severe neglect, physical abuse, medical child abuse, whatever the issue is.
But we also do inpatient consults in the hospital.
So if there's concern or in the differential diagnosis of some form of abuse, then they'll consult us as well.
And either myself or one of the advanced practice providers would consult.
But then we're also...
We're very fortunate in our team in that the people that have worked together in this team have been there for years.
We don't have a lot of turnover.
So we have a lot of experience with dealing with the different types of abuse, but also dealing with the system.
So whether it's the criminal system or the civil court system, we've got a lot of experience at that as well,
working with different types of investigators.
And we cover a pretty wide geographic area.
So we're used to working with urban and rural people who have a lot of training, people who have no training, and kind of interpreting interpreting our findings for them.
So we are pretty busy.
We have over 2,000 visits a year in our clinic, and most of those are a one-time visit.
We do see children occasionally for more than one visit,
but that's mainly to follow up on injuries or for testing or things like that.
So we don't see them on an ongoing long-term basis.
And is this something, does every children's hospital have some version of this?
Do they all look different?
They all look very different.
So every children's hospital will have a child protection team or a child abuse team.
As to how many personnel are involved in that, it varies from maybe having a part-time child abuse pediatrician or a pediatrician willing to do this kind of work
to places like us that have full-time inpatient, outpatient kinds of units as well.
So it's depending on where you are, what what your population is, all those kinds of things, there's a huge variety on staffing.
And in a lot of children's hospitals, the child abuse pediatrician may have to do other types of pediatric work as well, and not just child abuse pediatrics.
So they may be doing some general pediatrics, they may be doing some emergency medicine.
So it varies.
Something that I've seen come up in some of the media coverage of various medical child abuse cases is the notion that the only doctors who are qualified to report abuse are child abuse pediatricians.
Absolutely not.
In fact, I would say we probably report less because usually the reports have already been made by the time they come to us.
So there's already been a concern or they wouldn't call us to begin with.
So oftentimes that report has already been done prior to seeing the child abuse pediatrician.
And that's not to say we don't make reports.
We obviously do.
But in Texas anyway, everybody's a mandated reporter.
So it doesn't matter if you're a doctor or a bystander, you're a mandated reporter.
Now, of course, there is
an extra layer of responsibility if you're a health care provider, but
the child abuse pediatricians are probably the smaller sect that make the reports.
Interesting.
And so you have a brand new program at Cooks?
We do.
It's actually, we've been doing it for a couple of years and then we kind of lost some funding and it kind of fell to the wayside and we've started it back up.
But what we are doing is
we have, we've always had case coordination for kids with complex medical needs.
So there are nurses and social workers who
monitor these cases to ensure that they're getting to their appointments, that there's not transportation issues, insurance issues, you know, it's home health.
I mean, mean, coordinating those services with the family.
And what we've done is we have specialized case coordination and caseworkers.
We have, we're starting a social worker soon and we have a position for a registered nurse as well where they will
actually monitor cases that are referred where there is someone in the health and within the cook system, a medical provider that isn't sure about the medical needs of this child.
Are we addressing them appropriately?
And can refer to this program and then
the social worker and the RN will monitor those cases to make sure the child's getting the appropriate medical care, not too much, not too little.
Okay, interesting.
Can you talk a little bit about when there is a suspicion of medical child abuse in
like specifically
what does the record review process for that look like?
Oh my goodness, and that is essential in every case, right?
You can't make a diagnosis of medical child abuse without referring, reviewing all medical records.
And that's not just from your own institution, because I'm sure you're aware that many of these perpetrators doctor shop and hospital shop.
And we've had children that not only use different physicians within our town, but also travel among different cities and among different states to get that medical care that they're trying to seek
so it's important to review all those records because that's where you find the discrepancies between what the caregiver is saying versus what is actually documented in the record and so when you start seeing those discrepancies where they're saying oh this child had a brain bleed for example and then you review the records and they're saying the brain bleed was found on this hospitalization You review that and you're finding, oh, there was a normal head CT scan.
There was no brain bleed.
So there you find that's a falsified report of a medical condition that isn't true.
And so you're looking for those kind of discrepancies in the record.
And then once you start looking for that,
then you let the medical providers know, well, this is a discrepancy that this isn't really the truth because these diagnoses get perpetuated in the medical record.
So if a mom says that or a father or whoever the perpetrator is, it gets put down as one of their diagnoses.
And then that just gets repeated throughout the medical record and it's not true to begin with.
And there's difficulties in reviewing medical records outside of your own institution because unless a legal guardian gives you consent, you can't see those records.
And so number one, they have to be truthful to tell you they went somewhere else, which if they don't tell you, you don't know to look.
And two, they have to give you permission to look.
So, if you don't have those two things, you're not going to even know the care that's done elsewhere.
It's just so complicated.
It's super complicated.
And to review these records is usually thousands of pages of medical records because you can't just review the doctor's notes, right?
There is so much within the nursing notes, telephone calls, all those things have to be reviewed.
It's every single notation, and it can take well well over a hundred hours to do all that.
So,
and of course insurance doesn't reimburse for any of that time.
So, how do you do it, right?
How do you have time to do it?
How do you fund something to where people can review those records and then find out, is this just an anxious parent who comes to medical care for every sniffle, right?
Which that happens, especially new moms and things.
You don't know what's normal and what's not normal.
And obviously there are anxious parents out there.
There are children with truly complex medical problems
that are getting appropriate care.
And then there are situations where a caregiver is lying or inducing illness.
And
in all that quagmire of information, you have to figure that out.
So what would you say to parents who
see some of these headlines about cases and see some of the media media coverage and their
understandable visceral reaction is
My God, what if I was in this situation where I had a child whose
I knew in my gut something was wrong and I wasn't getting
You know, I either wasn't getting good care or it was taking a long time to figure out a diagnosis and I was just trying to advocate for my child and someone accused me of abuse I think that that's a really visceral fear for parents
So what would you say?
What would you say to parents who are hearing some of these stories and having that fear?
And I totally understand that.
I mean, I can understand that, especially for parents who do have a child with complex medical needs, that that would be a fear.
But number one,
we don't want it to be abuse.
I mean,
that's bad for the child.
It's bad for us.
It's bad for the system.
It is a nightmare for everybody, obviously more of a nightmare for the family.
And nobody wants to falsely accuse.
So that's number one.
We don't want it to be that.
Two is it's not just one person that's going to come to that conclusion.
It's going to be whoever's reviewing the chart.
It's all the specialists involved because all of them are going to be spoken to to find out, Do you have concerns?
Do you not have concerns?
Because there's things sometimes that aren't put in medical records.
And so you do have to have communication with all the medical providers as well.
And if I have a medical provider that's saying, you know what, this child has X, Y, and Z, and they need to come in, and they should have come in, and
here's the tests that show it,
and I have no concerns about the parent, well, then there's no concerns about the parent.
To me, it's similar to when we have a child come in with severe physical abuse
or concerns for severe physical abuse.
There's trauma
and we have multiple specialists involved.
And if we don't all agree that that is what it is, then it doesn't go forward because it can't go to see to civil court or criminal court when there's going to be a medical opinion that disagrees.
Or it'll at least come out in court and nothing's going to happen with it.
So if we have all of our specialists that are involved in the care of the child, we all need to come to the same conclusion.
And if we don't, obviously, we're going to let, if there's investigative agencies already involved, we're going to let them know: look,
this specialist does not think there's a problem with this child, I mean, a problem with the care of this child, and everything is appropriate.
Okay.
So, I think that's important.
It's not one person that's making that call.
Right.
So, there's no really worry about, oh, some rogue doctor's just out there
for some reason going after parents right right because
and especially in these cases there are a lot of specialists involved usually and and like we said there are some real medical problems with the child usually as well and so we have to kind of unravel what's the reality what's not
but we but again all the specialists need to come to that same conclusion on that child Okay.
And now, in comparing, obviously, your team, the care team, works on all different kinds of possible abuse scenarios.
So, what makes medical child abuse
so
complicated to figure out?
You've spoken to a couple of these things, obviously,
just the sheer amount of records that need to be reviewed, but what other issues kind of come into play?
Obviously, it's the sheer volume, the complexity,
dealing with and trying to help medical providers
understand what's happening
in the different fields and disciplines, as well as nursing and people that are really involved in the care of this child.
Dealing with different levels of expertise and investigators, because like I said, we deal with rural counties and urban areas.
And obviously, there's different levels of expertise in figuring this kind of stuff out.
Some are really good and know how to look at social media and compare with the medical records and what's being said.
Some have not a clue how to get started and are very intimidated because it's a complex medical kind of thing.
And so, if you have a detective or a CPS investigator, they don't have any medical knowledge.
And so, they really can't understand a lot of times and don't know how to do the record review and how to kind of even start.
So helping them understand what and how to do it,
is very difficult at times.
And it's also
really difficult to put in the hours that's needed for these cases knowing that
it may or may not make any difference, right?
So I can put in hundreds of hours and it make no difference in the outcome of the child
can be pretty frustrating.
I would imagine.
And
my other, I wonder, it seems to me like you at Cooks do a really good job of supporting your staff and having, you know, an environment where
People can communicate, you know, your staff can communicate when they have concerns and that kind of thing.
Obviously, that's probably not always the case.
So can you talk about how
some of that tension that can develop between providers or even between, you know, the medical staff and CPS or like the sort of the sort of
taking sides that can come up in these cases?
Sure.
Well, I think our
system really fosters a collegiality amongst staff.
And that's not just like physician to physician or nurse to nurse.
It's also physician to nurse to advanced practice provider.
There is
a real respect for each other and our roles, and it's really fostered from the top down.
I think there also is a sense of trust developed, and part of that is because the care team's been at this institution since the mid-90s, and I've been there since January of 2000.
So
because of that, and because many of our advanced practice providers and nurses have been in our institution for 20 or 30 years, and so there's trust because we have relationships.
And I think that's what everything basically comes down to is relationship between providers, between departments.
We don't have any real competition with each other.
There's all of that between just from
environmental services up, right?
We all know we're part of the same team to take care of the children in our care.
And so I think it all comes down to that.
We have a very,
I've worked at a lot of different places.
And I have to say, I have the cell phone numbers for a lot of people.
that I can call for different specialists or investigators or whatever that if I want an opinion or I need help, they're a phone call away, they're an email away, they're an instant message away, and they respond, right?
It's not like I'm gonna send an email to an orthopedic surgeon with a question about an x-ray and he's not gonna get back to me or she's not gonna get back to me.
They get back very quickly, right?
And so we have that relationship and expectations that's fostered
by everybody.
And if you can't thrive in that environment, you probably are not gonna stay within our system.
Yeah.
Yeah.
I mean,
I wish all hospitals were functioning just like that.
That seems like the best way to protect kids.
It is.
And not only protect the kids, but whatever the medical care is needed, right?
Care for kids, like you said.
Right.
I mean, because we have kids that come in for concerns of abuse and we diagnose leukemia or some other medical condition.
And it really requires that coordination of care.
And that I know I can get that child in to be seen quickly by making a phone call or, you know,
it's a real comfort to know that we're not out there making these decisions alone.
We're not out there evaluating these children alone.
If I have a question of does this child have a bleeding issue,
I email the bleeding specialist and say, hey, these are the labs.
Can you look at this and see if I need to do anything else?
Do you need to see this child?
They get back same day and say, yes, no, do this, X, Y, or Z.
And it's the same thing with medical child abuse.
I email the doctors involved going, look, there's some concerns on this child.
What do you think?
They get back with me.
We coordinate together.
We may do a Zoom call together.
We may do it back in the day, pre-pandemic, we'd have a meeting together to discuss the case.
And I think that
really facilitates not only a comfort level of saying I have a concern to begin with by whatever provider is taking care of the child, but then coordinates that whole assessment.
That seems really important.
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I wonder if you could talk about, I think, something that it seems to me gets really lost in the whatever conversation there is happening about munch housing by proxy, that which is, I'm using that term because that's the most known one.
Obviously, we are going to on the podcast sort of differentiate between this is medical child abuse, this is the psychiatric disease.
Right, et cetera.
But I think with you know, munch housing by proxy as an issue and medical child abuse,
I think people forget that the doctors involved are human human beings sometimes.
I think that we have sometimes this preconceived notion of doctors as these very sort of Mount Olympus figures where they're not affected by any of this.
But obviously, that's not true.
And I would imagine that for a doctor that is working with a family where there does turn out to be medical child abuse, I mean, usually they're spending a lot of time there because the hallmark of these cases is that they're spending a ton of time at the hospital.
And, you know, from everything I've read, a lot of times these perpetrators can be, you know, they often do appear very loving, they can be very warm, very charming, very good at sort of building up those alliances.
And so I would imagine that for the doctors who've
discovered that they were being used as a tool to abuse a child, that must be absolutely devastating.
It is.
And I think when, especially maybe the first time it happens to you,
you start to rethink everything, right?
So you're going back and looking at every child, every diagnosis.
Did I do this right?
Did I do that right?
Because,
I mean, we go into
medicine because we want to help, not hurt.
And that is the goal of every physician is to help this child to be the best that they can be.
And to realize you may have harmed a child
is heartbreaking because that is the opposite of what you want to do.
And then there's the betrayal by a parent who you've trusted to tell you the truth about their child and that you trusted that they loved their child to take care of the best they could.
And so then
it makes you look at what everybody's telling you.
And so you get a little jaded sometimes.
And then, you know, and that's usually immediate.
And after some time passes, and then you can get back to your normal, like how you care for children.
But it is difficult.
And I think also
because we're physicians and we unfortunately do some, you know, get sued sometimes, I think there's the issue of, did I do something wrong?
Was it malpractice?
Did I make the right decision?
Why did I make this decision?
Let me go back and re-look at it.
If I had this information, would I have made a different decision?
And so I think it makes them really second guess
their medical decision-making for kids,
which is a shame because they usually made the right decision based on the information given them.
And so really, when I talk to physicians,
It's, if you had known that this parent was lying to you, would you have made that decision?
No.
Well, then there you go.
You made the best decision you could with what you were being told.
Yeah.
And I think sometimes people who are not as close to it
don't completely understand
how reliant doctors are on what the parent is telling them, especially with really young children.
Well, you can't do your job any other way.
No, no, we're totally dependent.
So if you have a nonverbal child, obviously everything comes from the parent and what you can see.
And then realize they're in your office for 15 minutes, right?
So
we know
that what happens at home may not happen in front of us in the office, right?
Because they're there for such a limited time.
So we're dependent on the parent telling us, well, what did happen at home?
Can you describe it for me?
Whether it's vomiting, whether it's seizures,
whatever it is, like, you know, describe it for me.
And so we're dependent on that information.
And even with older children, they're not always the best historians about themselves.
They don't want to be there to begin with, usually.
And so even for children that have true medical conditions, they don't tell us everything.
I mean, if you're counting on a 10-year-old to give you an accurate history, that's probably, for most 10-year-olds, not going to happen.
And so you're dependent on the parent then.
And 99% of parents do give you accurate information and give you the best information so how do you figure out what's the one percent and
besides looking through medical records and doing all of that the whole everything that's involved in an investigation do you
are there sort of red flags that you like your staff to be aware of?
Yes, and that's usually how they get reported to us from other medical providers.
It's when things don't make sense, right?
So it's whatever the symptoms are and then whatever test you're performing or the physical exam it's not matching and or it only happens in front of that particular person
whatever the issue is so if it's only happening with one person if it doesn't match what you're seeing and what your tests are doing if the symptoms don't fit a diagnosis.
So there's like 10 different diagnoses that, you know, and that can be true, but if it's not fitting and not making sense, then you kind of got to look at it a little bit careful.
And I think the really hard thing as a physician is
there isn't a test, or there's very few tests that give you a 100% accuracy on diagnosis, right?
So it's the history, the exam, and the test that gives you that information.
So if I came to you and said, I have no problems eating, and you do a swallow study and you find a couple of episodes of reflux, you'll be going, eh, you're fine.
If I come to you and say, man, I am vomiting, I've got this indigestion, I've got burning in my throat, and I have a couple of episodes of reflux on the test, you're going to be going, oh, it's reflux.
So it's putting the whole thing together, not any just one thing.
And that's where when they fabricate the symptoms, it leads you down the wrong path to the wrong diagnosis.
And I wonder if you could talk about just something that you said that sort of stuck in my mind
about,
you know, the idea of how much sort of work and resources and manpower it is for a hospital to look into a possible case of medical child abuse.
And then how
disappointing is probably a really light word for this, but then when that then gets
ignored in family court or it falls apart and when one of the other dozens of ways that it can fall apart.
and i would imagine that there's many times where the medical staff
knows
that abuse is happening and then those children remain with their guardians and usually don't come back to our institution right so you don't know what's happening with the child and how they're being cared for you don't know an outcome um is the child okay are they not okay are they alive are they dead you don't you're never going to know because they disappear from your system at that point.
And so it's, and
I work with the different systems, child protective services, law enforcement a lot.
So I understand why things fall apart sometimes.
And I,
even though it's disheartening and disappointing,
I
understand
it better than other people within the medical system do.
And they get totally frustrated because they have, they don't understand why is this person not arrested?
why is this child still there i don't understand we said this we said this we wrote an affidavit and it still didn't help and they don't understand and it's
it's hard but for those of us that stay in this work um you have to learn to kind of let it go and move on to the next child because there's so many that need help
and that the fact that you couldn't help that one is awful but let's see if we can help the next one.
And then learn from it.
What do we need to do better?
What do we need to document better?
What can we learn from that particular case that we need to improve on?
And that's kind of a quality improvement thing.
Do we need to do a better case review?
Do we need more information?
Do we need other specialists involved?
Do we need to figure out another system to protect?
And I think that's how our
program kind of came to fruition
was because we were trying to figure out a quality improvement process that would help with these cases.
So, really, just making those systems better in a holistic way.
Correct.
Correct.
So,
I'd just love to kind of know from you, like, what do you think
needs to happen to move this issue forward?
I realize that could be like a three-hour long answer, but I guess
from your perspective as a medical professional.
Obviously, we need
more people that know how to do the records review, right?
Whether you train people to do it, it doesn't have to be a doctor, right?
I mean,
but having the staff at the different institutions that have the time, because again, this is a non-reimbursable position or positions
that can do this kind of work and give it the time it needs.
So it's training within the medical system, dollars within the medical system to look for it.
There's also training for the different
protective services in Texas, Children's Protective Services.
Law enforcement, law enforcement in most jurisdictions do not take these cases at all.
And there's sorry when you say they don't take them.
They don't.
They don't investigate, they don't prosecute, they don't, in a lot of jurisdictions, that never happens.
What does that mean for, so I'm trying to sort of put together,
I understand that a lot of them don't know what they're doing when they take the cases, but you mean they just say, nope, we're not going to do anything about this?
Or I don't have anybody to do it.
I don't, it sits on a desk.
The DA is not going to take it.
Why am I going to invest, put hundreds of hours into it?
The DA is not going to take it anyway.
So that doesn't happen because if the civil side, if the family court side can't protect the kids, there are times that we need the criminal justice side to help protect the kid.
And
so when both those systems don't work, then we have unprotected children.
And that's what I personally see many times in these cases.
And I think something that there
is hard for people to wrap their heads around this issue is sort of this question of: is this a psychiatric issue where the mom needs more support, or is this criminal abuse where the mom belongs in prison?
And obviously, I don't know that it's an either-or dichotomy, but
I do think there's this strange tension with these cases between civil and criminal court.
There is, and I think that it's even within the medical community itself and between child abuse pediatricians, you're going to find various opinions.
I mean, obviously,
the child is injured, so it is a form of abuse because the
perpetrator falsifies information, knows they're falsifying information, and hides it so they know they're doing something wrong.
So, for me, from a criminal standpoint, they know they're doing something wrong and they know they're doing something that's harmful to their child.
So, yes, it is a criminal offense.
Whether that person should go to jail is not my decision to to make, but I do think it is a criminal offense when the child is harmed by it.
And do you find that family court judges
in general are knowledgeable about this kind of abuse?
Not really.
I mean, what I find most of the time that they don't understand is, and the question I get asked a lot is, well, isn't this just malpractice?
And it's not, because
the medical system, the physician, the medical provider is making a diagnosis and decision based on false information.
And if that caregiver had been truthful, they would have had a correct diagnosis.
And so, no, it is not malpractice because they're given false information.
And I think it's really hard for people to wrap their brain around is that this doctor made the right decision, but it's still abuse and it was still the wrong thing for this child it has nothing to do with the medical decision made by that doctor because it was right based on the information given yeah
but it's because the caregiver lied and so I think that's hard and then the
judges do tend to focus on the psychiatric part of it and they'll oftentimes do a psyche val on the parent and it comes back normal Well, of course it's normal.
The person's not crazy
and they can manipulate as well the person doing the evaluation.
So, it's not a psychic value need.
The diagnosis is made by the medical providers, right?
Because it's a pattern of behavior.
Because it's a pattern of behavior, it's medical care that's done that's not needed.
The diagnosis is there.
Now, why they did it is where you get into this kind of the psychiatric of the mom.
And can she be treated, right?
Can she not repeat this behavior?
And number one on that is accountability and accepting what they've done and empathy for the child who they've harmed yeah and i something that always sticks with me is uh dr mark feldman yes has told me who's he's obviously been working on this issue for close to 40 years is sort of one of the top experts in the country and he's told me that in all of that time he's had three people confess right to that behavior so right and and it's not only confess confess, but then, because sometimes you'll get a partial little confession that, yeah,
I lied about that, but I did it because I wanted to make sure the doctors understood.
Well, that's not really it.
That's not why you lie.
And it's acknowledging what you did and the harm that came from it and that you're the cause of the harm.
Right.
Full accountability is different than
partial.
And so the other thing I'm wondering about is, you know, as you I'm sure know, it is very hard to get anything like an accurate statistic about how common this is.
There's been not a lot of funding for research, not a lot of research that's been done.
I think the stat that gets brought up most is a British study from like 10 years ago that put cases in the U.S.
between, I think, 650 and 80.
I mean, it's just, you know, so, but I think in general, the perception is that if this happens at all, which some people don't believe that it's even real,
which is a sort of whole other ball of wax.
But, you know, I think when people do know of it, they assume that this is this incredibly rare, incredibly exotic thing
that is, you know, they think of the Didi Blanchard story and they're like, there's this one crazy family.
Do you think that it's as rare as most people believe?
No.
And I know when we, when I first started in this role 21 years ago,
we looked at maybe one or two cases a year as being
Munchausen by proxy or medical child abuse.
And over the years, when we've really kind of developed
a better system
for
looking and not being siloed, right?
That's one of the problems is siloed medical care.
So once we started looking at getting out of those silos and really
looking and having a system for other medical providers to
speak out and notify
that there may be an issue, we started looking at 30 or 40 cases a year.
And out of those cases, there are some that aren't, right?
That are truly a true medical condition or an anxious parent.
But out of those, you know, we'd have 20 that CPS validated.
Now, where they got removed was a whole nother thing, but that CPS did validate and substantiate as being abuse.
So,
and now how many of those were abuse and didn't get validated, that is another thing that we can't really know for sure.
And I think the numbers growing as we have a computer in our pocket to Google everything and to look for symptoms that you can falsify.
So I think it's going to get worse, not better.
And also, as our society is all about social media and how many likes you have and how many people watched whatever,
you know, I think that kind of feeds into it as well, that attention seeking.
And so I think it's going to get worse, not better.
Yeah, I've heard that from numerous experts.
And I think
one of my hopes is that
I think one thing that is really
imperils children in these situations is not only people's lack of knowledge, but the depth to which people don't want to believe that this is happening.
I think it's very hard emotionally for people to accept.
But they don't want to accept abuse in general.
I mean, I think that's a very difficult thing to acknowledge that's happening in your community.
And so I think that's difficult.
And then when you start looking at this type of abuse that is really bizarre behavior for a loving parent to imagine that somebody else could do this,
I mean, it is unimaginable until you see it.
And you're like, yes, it's unimaginable, but it happens.
Right.
And I don't understand why a pedophile is attracted to a child either, but they are.
We accept that it happens.
And we accept that it happens and we put them in jail and we hold them accountable.
So to me, it's kind of a similar thing.
Yeah, I agree with you.
I think that's a really apt comparison, actually.
My hope is, because I think
part of
what might help people understand it culturally is sort of understanding the why.
And I think it is unimaginable as a parent until you've seen it.
And
Even then, it's hard to sort of accept, oh, this person's really doing it because the payoff is the emotional gratification of sympathy and being seen as a heroic parent.
But I think that because of social media, because of the way it's capitalized on this in all these nefarious ways, I do think we're getting a little bit better at understanding how
affirmation and attention does behave like a drug.
And so I'm actually hoping that people will be able to connect those dots a little bit because I do.
I think now, you know, it used to be, I'm sure that this kind of abuse has been with us forever, but it used to be, you know, there was your community that you talked to and saw in person, and that's all you could,
those are the only people that you can get.
And now the sources for attention and social affirmation are just literally infinite.
Right.
And there's a group for everything.
And now you can do things like GoFundMe and fundraising.
And oh my lord.
And there's benefits too.
You can get paid to stay home and take care of your medically needy child.
And your mother can get paid to stay at home to take care of your medically needy child.
And
there's emotional payoff there's financial payoff there's also the emotional payoff of that you're smarter than everybody else because they believe you
all these really educated people um so there's there's a lot of payoff for a person that's has those kinds of needs yeah and i think you just it's sort of once you have the framing
it falls into place but I think it does take a while to get people there and there's sort of various layers of things they have to accept to be able to see to be able to see and i think it's really difficult also because
these are not super parents at home right it's just in front of other people what we find is when you look in the home life these children are often neglected left in a room and really aren't getting the care that even a healthy child would get
because unless they're getting that payoff there's not a reason to be the super parent.
And so these children often are neglected or physically abused or other things happening to them when they're in the home.
That's heartbreaking to think about.
And I think it is good for people to understand that disconnect because I think it is that lack of bond and lack of empathy because
otherwise you wouldn't be able to do that to your children if you felt the normal empathy that a parent feels for their children.
There's absolutely no way most of us would throw ourselves in front of a bus for our children.
Right, right.
And you know, rather than let them be harmed.
So,
well, thank you so much.
Is there anything else that you wish I had asked you that you would like people to know about this issue?
That would, you know, my intention here again is just to really humanize this and build out as much as I can.
We spend a lot of time on the medical professional side, but I think families see it a lot too.
We find that also at the ones we've seen where there are other family members who have those concerns and think maybe they're crazy and worry about that or
have have these concerns about it.
And I think number one, the family member needs to know they can make the report as well.
And two,
they can call the medical providers and give information, right?
So they can't be given information about the child because of HIPAA and the rules on giving that private information, but they can share information with a medical provider, say, hey, this is what I'm seeing or not seeing.
I just wanted to let you know.
And so that's always possible as well.
So I think that's a good idea.
I think that's kind of a best practice for families and people, or even like if it's your friend, if you're a child's teacher, like if you know where the child's being treated, presumably, and you're seeing this pattern of behavior that's really concerning, is that the best practice to call and say, I just have some information that I want to share?
I don't know if it's best practice because there is no best practice, right, in this arena.
But I think if you're very concerned and you're very concerned that the child is being harmed because of the medical interventions, that that's information that you should be able to share.
You may not be able to get to the medical provider.
You may only be able to get to the nurse, but get to one of the medical people within that clinic or institution to share your information.
And then also,
if you are really concerned, you have to make a CPS report.
Even if nothing happens, you have to make that report because that is the only way it is ever going to get investigated.
Somebody has to make the report.
You know, these perpetrators can be unbelievably vindictive.
Oh,
and litigious.
Yes, I know.
Yeah.
I mean,
I'm sure you have stories that you can tell me off my, but, you know, they can be unbelievably vindictive.
So the cost of going up against someone
can be very steep.
So I wonder, like,
if there's anything we can tell people to sort of mitigate, I mean, I don't know.
It might just be this.
It's like, I want to tell people that they should be reporting this, but then I understand all the reasons why.
Right.
No, I understand that too and you
you can make an anonymous report to CPS but to be honest I don't think those are looked at as closely as if that you if they can talk to you and and talk to the reporter so I think that's a problem
I think you can when you talk to the medical provider you can say please do not mention where you got this information from
but then when CPS talks to you you have to tell them right because they have to be able to talk to the person who had the issue to begin with.
So really it comes down to
child protective services following their policies of confidentiality.
And there is no guarantees, right?
There are no guarantees in any of this.
But if you don't try, then you know nothing is going to happen.
Yeah.
Right.
I mean, and that's the quandary.
And that's what the quandary that I hear also from physicians, right?
It's like, well, I don't want to lose them out of my my practice because I want to be able to keep a close eye also from a medical standpoint and keep my kind of thumb on the, you know, finger on the pulse, so to speak.
And if I make this report, they're going to leave my practice,
which usually is what happens.
But then I'm like,
how,
it's a catch-22.
You need an investigation.
You pray that you've got an investigator that's educated, right?
And you
pray that it happens right.
And I can tell you a lot of times it doesn't.
In fact, most of the time it doesn't.
But it may be that fourth report or that fifth report where it finally is done right.
And you're able to then protect the child.
So I think it's like just staying with it and report and report and report
until something finally happens
before something bad to the child happens, right?
Because it does carry a pretty high mortality rate.
And so, and not to mention morbidity with all the chronic issues that these children face.
But definitely something before things can't be turned around.
Yeah.
A common misconception about medical child abuse perpetrators is
that was perpetuated, I think, partly by some of the media, such as, you know, Sharp Objects and the Act that really put this on a lot of people's radar.
I think there's this idea that
these women are all going to be, and I say women because the vast majority are mothers of children,
that these women are going to be so outwardly disturbed, seeming that people would notice them from a mile away.
So can you talk about whether that's true or if there is a typical presentation of this kind of perpetrator?
No, that's absolutely not true.
And that's why they
don't,
they aren't found out for years, usually.
I mean, it's usually several years of medical interventions, unneeded medical interventions, before
anybody even suspects, right?
So these are very normal parents.
And again, yeah, you're right.
By far the majority are moms.
So very normal, caring, oftentimes educated, but not always
moms who you would never pick them out from anywhere as being anything than normal Mary Jane walking down the street.
And in fact, they come across as a better parent than most.
So that's why it's very difficult to kind of weed them out and figure out who's doing what.
I think really what happens is these are
parents who
are are
enmeshed with the medical system,
right?
So
they, if you look at their
child's health record, once or twice a day, they're either in contact with a medical provider or they're visiting a medical provider.
And even in our chronic, really sick kids, I mean, that can happen, but not usually.
And so
when you see that kind of pattern, and these are children that have what I call a positive review of systems.
So, whatever part of the body you ask about, there's something wrong, right?
So, they may come in for vomiting, but when you ask about neurologic symptoms, oh, yeah, they do that too.
You ask about skin conditions, oh, yeah, they have that too.
You ask about headaches, oh, yeah, they have that too.
So, it's like everything you ask, there's some kind of problem with it.
I mean, again, I exaggerate a little bit,
but
there are so many different things wrong with them that may or may not be treated at that moment so that's kind of the presentation I see and they will talk forever so when I go into the hospital to see one of these moms I know I'm going to be there for hours because when they're giving when I just let them talk and I just ask what's wrong with your child
About six pages later, we might be stopping
to allow me to actually do an exam on the the child.
So it's that kind of thing.
They are, there's something wrong with everything.
And
they also present with symptoms that may be vague.
So it's like a lot of vague different things that don't really fit a certain diagnosis.
And so you're looking at a lot of different diagnoses or trying to do a lot of tests to weed out different things, which is also a common presentation.
They also
will present with symptoms that do tend to be sporadic, so it's not going to happen in front of the doctor.
So, you know, vomiting, but they're not vomiting at the moment you see them.
They have seizures, but they're not having a seizure right there in front of you.
They have autism,
but they're 18 months old and kind of young to be diagnosed with autism.
But, you know, they say they've been diagnosed with autism, but the child seems very interactive, even the older ones.
Or, you know, just these kind of vague things that can look a lot of different ways.
Interesting.
And as you were talking about all that, I think something that
is
an interesting nuance about this is differentiating,
because this does get so entangled with there's medical child abuse and that's a pattern of behavior.
There's factitious disorder imposed on another, which is a psychiatric disorder.
And not every person who commits medical child abuse has FDIA.
And there are these other reasons occasionally that you are seeing people do this.
So if you are a parent who's suffering from delusions, for example, or if you're, as you said, an over-anxious parent that's just hitting Dr.
Google way too hard, then you might still be committing medical child abuse because if you are over-medicalizing your child or
telling doctors false information, that's the pattern of behavior.
I mean, can you speak a little bit about that?
I would never diagnose a child with medical child abuse if it's a parent that's
psychotic and actually believes what their child has.
So whatever they're presenting, they believe it because they're psychotic.
To me, that's not medical child abuse.
That is a true psychiatric disorder on the parent.
Once you get that treated, you'll be fine.
And so they're not trying to falsify information.
They are truly believing what they say.
The same same thing with an over-anxious parent, even if they're coming in and getting antibiotics every other week for, you know, a cold or whatever they ear infections they think they have, again,
they're not really falsifying information.
They are bringing the child in.
They're not going to lie and say, my child has
runny nose or fever or whatever when they don't.
Now, maybe they're saying their child has a fever and once you question them, they're like, oh no, just felt warm.
Or it was 99.
Well, that's not really a fever.
So they're not really falsifying information in order to get treatment.
So I think
that
for me, to diagnose with medical child abuse requires harm to the child, right?
also
that there's falsification of information in order to get a needed treatment.
So an intentional deception.
Intentional deception.
Okay.
So you have other ways of handling parents that are anxious that need psychiatric.
Absolutely.
We shouldn't be sort of worried about everyone falling into the same bucket.
Yeah, that would never ever get reported.
That would be, unless a parent is, there's risk of harm to the child because they have a psychiatric illness that they're refusing to
get medical care for, like they're refusing their medications, then that might require a child protective services report just to ensure that that parent takes the needed medication so they don't later harm their child.
But that's a different issue and a different diagnosis.
Yeah, and I would presume that once you start digging into them, it's actually pretty clear.
Oh, yes.
And it's really, to me, it's really easy to differentiate those because believe me, I've had parents who are psychotic and truly believe what they're saying.
And then once you kind of
I can't dig into their mental health issues, right?
Because of HIPAA.
I can't get information from wherever they're getting their care.
But if I make a child protective services report, they can find out that information and then we can make sure that that parent gets the appropriate intervention so that they can keep their child and take care of their child.
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