S06 E05: “But she’s my mama”

True Story Media.

Before we begin, a quick warning that in this show we discuss child abuse, and this content may be difficult for some listeners.

If you or anyone you know is a victim or survivor of medical child abuse, please go to munchhausensupport.com to connect with professionals who can help.

A quick warning that today's episode includes mention of a suicide attempt, so please take care while listening.

It's a really,

really

messed up thought.

When I first started to like realize mom had made my sister sick, and then

after my brother got sick,

there was a part of me that struggled that like I was the only kid that wasn't sick.

And I wondered like if I wasn't good enough.

or if I wasn't compliant enough for her or something.

Like, I don't know.

In light of what her siblings endured, Michelle might seem like the lucky one.

But forever being an afterthought to the ongoing drama of first Angelin and then Colin's medical crises did its own kind of damage.

And Michelle's sense that she should have done something more to protect her siblings, a responsibility that should never have been put on her, haunts her to this day.

People believe their eyes.

That's something that is so central to this topic because we do believe the people that we love when they're telling us something.

If we didn't, you could never make it through your day.

I'm Andrea Dunlop, and this is Nobody Should Believe Me.

Many of you know that I have a new book out this year called The Mother Next Door, Medicine, Deception, and Munchausen by Proxy, which I co-authored with friend of the show, Detective Mike Weber.

Did you know that it's also an audiobook that I narrated?

All true.

You can find the Mother Next Door Ears Edition anywhere you find audiobooks.

Now, here's a sample.

Unlike with Hope, there was no carefully crafted facade of a loving mother doing her best.

Brittany's abuse was in plain sight, observable by all who interacted with her.

But no one knew what to do.

It seemed impossible to prove that Alyssa didn't have these medical issues.

And after all, why weren't the doctors doing something?

But even if people in Brittany's life suspected she was mistreating Alyssa, they had no no idea what she was truly capable of.

And the darkness in Brittany would shock them all.

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Michelle had been through a lot in her young life by the time Colin was born, and her family life continued to be strained.

I remember us pretty well getting along for that first little while.

Like, I remember being very confused about why I was depressed, you know, and being like, I remember looking around and being like, okay, well, I'm back with my parents now, which is always what I've wanted.

And I'm here with my brother.

And like, I couldn't understand why I was feeling so like down all the time, trying to like sort that out.

But like.

We didn't really talk about mental health in my family.

And so like, other than like my mom's one thing, quote, you know, one little mental breakdown.

So it just wasn't something that like I had the space to explore, which I think is why my friends became really important during that time because we were, you know, at that age, everybody's going through some angsty teenager stuff.

Lisa's one little mental breakdown, where she repeatedly poisoned and attempted to suffocate her infant child, was positioned in the family the same way Lisa had positioned it in her legal efforts to regain custody of her children, not as a horrific crime Lisa had committed, but as a symptom of her own distress.

And Michelle's parents expected her to get over it.

In an email from her father, Carrie, he writes to Michelle, quote, Your mom told me about your feelings towards her.

You are the only one who can work through them.

But no one, not even myself, knows the state she was in at the time.

She paid for what she's done and has done what she can to make it up to everyone.

It's easy to imagine why Angelin's abuse was top of mind for Michelle after Colin got sick.

Not to mention that her mother's actions are not the type of thing one just works through.

And now her brother Colin was suddenly and mysteriously sick.

Would the past turn out to be prologue?

And Colin, whose health issues were escalating, was the renewed focus of his mother's attention.

That's really when I remember not taking care of him so much anymore.

And she handled everything after that point.

Which, I mean, for me, like, I didn't think about it back then as anything unusual.

I just thought, like, there was some stuff going on.

Like, again, I was very involved, like, at that age, like getting involved with like my own friends.

And, like, I tried to stay gone from the house as much as possible.

And, like, just being gone is, you know.

Amidst all of this, Michelle, like all teenagers, was trying to figure out who she was in the world.

And she began to find connections and community outside of her family, playing clarinet and being a flag girl in the marching band, making friends and even dating.

But then came Colin's illness and the move to Alabama.

I had like a pretty serious boyfriend at the time.

And so for me, it was the end of my world.

Picking up and moving in high school.

And I remember my whole friend group, like we just all cried.

Like we had a big going away party and all my friends came and it was just this whole really, really dramatic thing for me.

So there's basically you were there for a couple of years living out together.

Yeah.

What was going on with Colin at this time?

It was

very up and down.

Like it was like

he would be like really really sick and like in the hospital and then he would be home for a little while and there was like just my mom had started this like caring bridge page and that's one of the biggest things like i've really

had

Such feelings about me doing this publicly and being on a podcast and then it just kind of started to slowly hit me recently like how much of our lives my mom put on the internet already and how much is out there like I actually went back and looked up her The Caring Bridge page not long ago, and it is just more information than a human being could ever get through.

This blog is over 170,000 words long.

For reference, that's more than twice as long as any of my books.

And most human beings, to Michelle's point, would have neither the time nor the inclination to read such a thing in detail, unless investigating these cases happened to be their full-time job.

Lisa begins this blog not when Colin is diagnosed with NMO, but about a month before on February 10th, 2008, while they were still trying to figure out what was wrong with him.

A process Lisa explained in an interview with the podcast, Exceptional Stories and the People Who Live Them.

After he was released from the hospital in Savannah, he was home a few days.

We started noticing that he was stumbling and falling a lot.

So we took him back to the pediatric neurologist in Savannah.

She said then she was almost certain he had multiple sclerosis and wanted to start him on some, what I thought at the time, looking back on it, it's funny, but at the time I thought, oh, that's pretty harsh medication to put my kid on.

She's wanting me to give him injections.

And, you know, as a mom, I just was like, I don't really want to do that.

So I started investigating and researching and trying to find someone who was a specialist, pediatric specialist in multiple sclerosis.

Finally got in touch with the National MS Society in Atlanta and they said, you need to go to Birmingham.

That's where the specialist is take him to birmingham they'll be able to figure him out so long story short got all our medical records sent them to birmingham the doctor immediately called and said can you be here wednesday this was like monday can you be here wednesday we're like absolutely

In this clip, Lisa talks about her reticence to put Colin on a harsh medication.

But by spring of 2008, Lisa is detailing an extraordinary list of medications that Colin's been prescribed.

These include the steroids, which have taken a visible toll on Colin's body, Tagritol, an anticonvulsant, Lyrica, a nerve pain medication, Baclefin, a muscle relaxant, hydrocodone, which is an opioid, and the immunosuppressant drug Celcept.

Far from seeming nervous about these harsh medications, Lisa describes fighting with insurance and even calling the drug manufacturer to get him Celsept, which she succeeds in doing.

As we covered in the last episode, Colin did not immediately get diagnosed with NMO.

In Lisa's telling of this odyssey on the CaringBridge blog, she adds in that both their pediatric neurologist and their regular doctor told her originally that Colin might have a brain tumor.

She then goes on to describe the pediatric neurologist ordering an MRI and telling them that they found something on Colin's brain, but quote, wouldn't tell them what, and then explaining to the family their suspicion that Colin might have MS.

This trajectory doesn't make a lot of sense as told here for a few reasons.

Number one, it's wildly unlikely that any doctor would tell a parent that a child with optic neuritis might have a brain tumor without an MRI to back this up, as there are many other possible causes of optic neuritis.

In her podcast interview, Lisa says the doctor was almost certain that he had MS, which is highly unlikely after one MRI.

On her blog, she softens this a little, saying that the doctor explained, quote, Colin's body was attacking itself by destroying the myelin on those nerves.

She said it could be a one-time thing for him, ADEM, acute disseminated encephalyelitis, or it could be MS, multiple sclerosis.

Lisa said the doctor told her only time would tell if he recovered and how much of recovery he would have.

The condition Lisa mentions, ADEM, is a rare, short-term illness that causes inflammation in the brain and spinal cord.

It's usually a one-time occurrence and is most common in children ages five through eight.

The more serious diagnosis she mentions, MS, is extremely rare in children under 10 years old, with an instance rate estimated between 0.05 and 0.65 per 100,000, according to the Cleveland Clinic.

MS also doesn't have a single definitive test, so it usually takes some time to reach a diagnosis.

Misdiagnosis of MS in NMO cases appears to be somewhat common, especially before the antibody test.

So this trajectory that Lisa describes does make some sense.

But what especially caught my attention is Lisa's description in this podcast interview that she researched MS and found Dr.

Ness's name, not that she was referred to her by the neurologist in Savannah, who even according to Lisa suspected that Colin's symptoms could be a one-time event.

Now, of course, there's nothing wrong with a parent doing research to help their child and seeking out the best doctor to treat them.

But according to the dates in Lisa's blog, she's in Dr.

Jane Ness's office less than a month after the initial testing and the suggestion of MS being a possibility.

With the context of Lisa being a convicted Munchausen by proxy perpetrator and the fact that finding Dr.

Jane Ness facilitated a move across state lines, away from the hospital system that caught her the first time, this picture is highly concerning.

And even before all of this, following his alleged onset of symptoms, Colin was being treated with a large amount of steroids.

Photos of him taken from Christmas in 2007 show him looking unrecognizable to those taken a month earlier.

Sabrina remembers this period well.

And just to note here that we were in Village Pizza in Hazelhurst for so long for this interview that you do hear them cleaning up around us with a vacuum in this clip.

He was...

I mean, it was like an incredibly long time he was on steroids, like for months and months on.

And I'm like, that's weird because I've never seen a especially a small kid go on steroids for that long of time so I think other people started questioning it because

the freshness of angelin and all that stuff hadn't like completely dissolved so when all this starts coming out with Colin and he's getting sick and he's going to the preschool and the people at the preschool are noticing, man, he's gaining all this weight, what's going on?

You know, they're noticing all this stuff.

When Lisa tells the story of Colin's illness, she is always clearly positioned as his champion.

In the same interview we touched on earlier, she talks about not only her yen for research, but the importance of her faith.

You know, also in those first days, I just remember being, pouring myself into finding every piece of research I could find, finding out if there was research going on, where I could go to get that research,

what were the actual rates of mortality with NMO.

I wanted to know it all.

And that's kind of how I cope with things.

There were moments, though, that I remember thinking, how are we going to get through this?

How are we going to do this?

And almost that panic building up.

But then that's also when you say, you know, if you have a relationship with the Lord, you have to stop and say, okay, you sent this for a reason.

And I don't understand that reason.

And I don't know that reason, but I have to trust you to give me what I need to help me get through.

whatever this is, whatever comes.

But I also think there's a,

you know, people talk about grief and they mostly talk about it in death, but there's also a major grief that goes along with a parent or any family member who is diagnosed with the disease there's a grieving period my child's never going to be who i thought he was going to be he's going to be his own person he's going to be someone that god's made him that he's made and he's poured into himself but he's not going to be that little boy who could run around and play football if he wanted to he's not going to be that little boy who can always be interacting with other kids because he's tired and he needs to rest so there was a some kind of a grief period that went along with those

first probably years in realizing that Colin was not,

he was forever changed.

He would forever be different than what he was the day before he lost that vision.

There are frequent references to God and the role of faith in Lisa's blog, in particular with respect to Colin's bleak future.

In a post just days after he was reportedly diagnosed, Lisa writes, quote, I wonder what his future will be like.

Will he get to go to school?

Will he grow up?

Will he marry and have children?

A couple weeks later, Lisa writes, quote, right now, Colin's future doesn't seem too bright.

Today was a reminder that we are grieving for his future and watching his body struggle.

This summer went by so fast.

2025 is both flying by and has already been 100 years long.

Don't ask me how, I'm not an astrophysicist.

That's just my truth.

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In the weeks following Colin's diagnosis, Lisa writes that he's admitted to the hospital for IV steroids, put on Lyrica, a medication for nerve pain, and has a central line placed in order to receive a treatment called plasmaphoresis, where a person's blood is filtered to remove harmful substances, especially abnormal antibodies.

And according to our NMO expert, this is all in line with the best practices for treatment.

So for acute treatment, the first line of defense is steroids, IV steroids, for a period of days.

That will lead to improvement in almost all cases, but in many cases, that's not sufficient.

And we know that for NMOSD, specifically aquaporin for positive NMOSD, outcomes are likely better when something called plasmapheresis is used.

And plasmapheresis is where they put a central line, so a big IV, such as in the neck.

and it basically filters the blood and so we can filter out those bad antibodies and also filter out bad inflammatory molecules that are causing more inflammation

and in the spinal cord and in the optic nerves.

So that's something to quickly get those bad things out of the body.

That if we are suspicious for NMOSD, we have a low threshold to start that as soon as possible.

And while fear with a serious diagnosis such as NMO is understandable, the way Lisa speaks about Colin's life and future are not in line with his likely prognosis, especially as he appears to have received treatment pretty much right away.

Especially in children, they can be more likely to have a one-time event in terms of having an attack that could look like NMOSD.

However, this may not be a lifelong condition, and it may be that once they recover from this event, nothing will ever happen again.

and are more stringent than the criteria to diagnose this disorder when the antibody is positive.

So if the antibody is positive, all you need is one core clinical symptom.

So one of the main ways this presents, and you can diagnose this.

If the antibody is negative, you need two core clinical symptoms.

And you have to have the MRI imaging look a certain way that kind of mimics where these water channels are, or a certain way that the lesions should look in the inflammation in the spinal cord or in the optic nerve.

So, we do have those criteria, but in children, we sometimes find that even if they meet criteria for CR-negative NMOSD, they may not require lifelong treatment with immune medication.

Lisa's blog describes Colin's worsening state, that he's falling frequently, that his feet are turning in, and that he can hardly get out of bed.

In an entry dated April 17th, 2008, Lisa writes, quote, He walked up a few stairs.

Now, I know most of you will not understand what a huge deal this is, but it is.

Colin has not been able to climb anything, much less stairs, in a very long time.

Not only do Michelle and Sabrina not remember any such symptoms other than Colin's fatigue, family photos from a vacation in March of 2008, near the time Colin was diagnosed, tell a markedly different story.

Though Colin is in a wheelchair in some of these pictures, in others, he's running around a water park, playing mini golf and splashing down water slides.

The doom and gloom tone in Lisa's blog is unrelenting.

She makes the first mention of hospice care in August 2008, a mere five months into Colin's diagnosis.

Colin continues receiving plasmapheresis treatments for which he has a port placed in June of 2008.

This is highly concerning given Lisa's past with her daughter and Colin's numerous instances of sepsis, the first of which nearly kills him immediately after the family's move to Alabama.

We spoke to Dr.

Becks, a pediatric hospitalist and frequent contributor to this show, about why ports and polymicrobial infections are a red flag in these cases.

It struck me immediately, what you said, the word polymicrobial, meaning not just one bug, but multiple bugs,

also a red flag.

I have had kids who have had ports and Broviacs, even for something like shortcut, who have never had a Lyme infection.

And so I looked it up and it is the risk this is like the aap the american academy of pediatrics they the study that they reported in their um in their journal said 0.9 per 1000

port or central line days

so not like how many ports but per day and then of course that study included kids with shortcut with other things that would have put them at risk.

Now, Collins risk was that he was immunosuppressed because of the medications he was being given, which does put you at a higher risk.

They sent him home from one infection with a line,

and Lisa was supposed to take him to the doctor's office the next day to get a blood culture to make sure there wasn't an infection.

That doesn't, I mean, again,

even the risk of line infections with a central line

goes up the longer the line is in.

Just because it's an older line, it's more at risk.

Your body starts to break it down.

You know, there's other reasons that it becomes more of a risk.

And if these doctors knew her history, which I'm going to go with, they knew something about it.

This was a woman who had already been convicted of doing this.

It was caught.

It was known.

One line infection would have been too much for me to say, this is, you know what I mean?

That already put him as an outlier.

And then you say multiple polymicrobial.

I was screaming by the end because I'm like, absolutely not normal progression in a person that has shown to have this pattern in the past.

That is unbelievable to me.

Colin has repeated instances of both sepsis and UTIs throughout this time, and Lisa isn't shy about sharing the details on her blog and Facebook account.

When Colin is hospitalized for sepsis in March of 2010, Lisa writes that he has a superbug, or antibiotic-resistant infection, that has entered his bloodstream.

This is another polymicrobial infection, meaning that it contains multiple organisms, including, Lisa mentions on her blog, E.

coli, which is highly associated with potential fecal contamination, though she later says that this test result was mistaken.

In another instance of polymicrobial sepsis in August of 2010, Lisa mentions that Colin's culture came back positive for Pseudomonas, which is rare, but caught my eye because it's come up in a number of previous cases I've covered involving Lyme contamination and is a red flag for Munchausen by proxy.

Sabrina was rightfully concerned, but it appeared that this was not an open topic for discussion.

But he just like

he got just seeker and seeker and seeker.

And I mean, every time you, every time you go, it would be just a, he couldn't get up off the couch.

You know, it was the, it was the NMO.

It was messing with him.

That's what it did.

Only that's not really what it did.

It's not all these symptoms are not symptoms of the NMO.

And I'm like,

you ask the question, it's like, don't ever come back here.

You know, you start asking questions.

Don't just, if that's how you're going to be, don't ever come back here.

And I'm like,

you know, what's going on?

Throughout the first year of his treatment and the family's move to Alabama, Lisa reports a drastic escalation in Collins' treatments, but nothing seemed to help him.

And in early 2009, they added Cytoxin, a potent chemotherapy drug which is sometimes used to treat severe autoimmune conditions.

Cytoxin carries serious risks, including bone marrow suppression, infertility, bladder damage, secondary cancers, organ toxicity, and gastrointestinal side effects.

In this video from the Guthy Jackson Foundation, which was filmed in December 2009, Lisa recounts this treatment progression.

I have a seven-year-old son who was diagnosed in May of 2008.

He has been through steroids, cell sept, IVIG, rituximab, plasmaphoresis.

He's now getting cytoxin.

We're looking at stopping Collins' cytoxin in December.

That'll be his 12th dose, and he's been on a year.

The way the doctors have explained it to us is that the cytoxin carries a lot of side effects, especially risk of certain types of cancers that increase after a year.

So they want to get him off of it.

So we're kind of looking at this point for what our next option is as far as treatment.

Even though you list a long litany, I was listening to at least four different interventions.

Believe it or not, there are still very good options on the table that we've had success with.

And talking with Dr.

Greenberg and him just telling me not to give up hope.

Colin has so many medicines that he's on.

He's also not able to go to the bathroom on his own.

So he has to be capped every four hours.

It takes both of us really working with him around the clock and we're looking for something at this point that's going to give him more time in between those flare-ups, more time for him to enjoy what he can of his life.

That's probably

our greatest desire.

Of course for him to be where he doesn't have his illness but even if he can go for six months where he does the things a normal seven-year-old does.

The other voices you hear in this clip are Lisa's husband Kerry and before that Dr.

Benjamin Greenberg, a neurologist and NMO expert who works closely with the Guthy Jackson Foundation, which Lisa appears to be fully embedded with by this time after attending their patient day in Los Angeles in November of 2009.

Colin has received all of the treatments by this point that are the standard of care for NMO.

And as Lisa alludes to here, around this time, she's consulting with Dr.

Greenberg, in addition to Ness, about other options, as she claims that none of the treatments are working.

And it's in this time period that Lisa starts pursuing yet another escalation, wanting Colin to receive something called a high-sci treatment.

High-dose cytoxin is an aggressive chemotherapy treatment that aims to reboot the immune system by temporarily destroying immune cells with large doses of the medication.

It's something that is occasionally used in severe autoimmune diseases when standard therapies have failed.

Because of its profound effect on the immune system, this is an extremely risky treatment, especially for children.

And it's clear that Lisa is pushing for it.

In a Facebook post in January of 2010, Lisa asks for recommendations for a photographer to take pictures of the family before Colin gets his, quote, high-dose chemo.

And she appears to be well aware of the risks.

On her blog, blog, she writes about her discussion with the doctors.

Quote, everyone agreed, the drugs we have tried did not work, but we were left with it being a huge deal to go with HiSci, as some of the docs think Colin might not make it through.

They want to make sure there is absolutely nothing else left to try first.

And this is the last resort.

Lisa nonetheless makes no secret of her desire to go forward with this treatment, posting on her Facebook in February of 2010, Tomorrow we will meet with Dr.

G, the head of the stem cell unit, praying he will agree to the high-sci treatment for Colin.

Please pray.

The following day, she posts twice.

First, a simple sad-faced emoji, and then this.

No high-sci for Colin.

Long day, no answers.

Bad day for Colin.

Sad-face emoji.

On her blog, she says that even though it's not an option in Birmingham, they'll continue to pursue it elsewhere.

You may have also noticed that in the clip from the Guthy Jackson Foundation video, Lisa says Colin was diagnosed in May rather than in March of 2008.

Now, I don't want to overly nitpick.

Maybe this is nothing, just a function of imperfect memory, which we all have.

And yet...

I'm also deeply distressed at the way that Lisa constantly talks publicly about Colin's bladder and bowel issues in the blog, in the videos, and on her social media.

Colin at this time is a seven-year-old boy, and this is humiliating.

My daughter right now is six, and if I ask her if she needs to go potty before leaving the house in anything above a whisper, the death stare I get, let me tell you.

So even though Lisa is apparently unsuccessful in her pursuit of this risky high-side treatment, Colin is still on a huge number of medications during this time.

This is especially concerning in the hands of a Munchausen by proxy perpetrator, especially given how many of these medications have side effects like nausea, dizziness, mood changes, gastrointestinal issues, respiratory complications, and fatigue, which are all among Colin's reported symptoms.

Throughout Lisa's chronicle of Colin's treatment, he also never seems to improve, even temporarily, which is highly atypical for NMO, which is a relapsing disease, not a wasting disease.

In April 2011, Lisa makes a series of defensive sounding posts about how Colin is still very sick, even if he looks healthy.

A friend posts a comment on her page that reads, Lisa, I am just amazed how good Colin looks.

God blows us away, doesn't he?

Lisa replies, thanks.

As you know though, looks can be deceiving.

That lasts for about 15 minutes and then it's gone.

She follows this up with a post about recognizing, quote, invisible illnesses.

On April 30th, Lisa posts a picture of Angelin and a smiling Colin in the swimming pool.

A friend comments below, Such a blessing to see Colin so happy.

He is a miracle.

Praying he continues to do well.

Lisa replies by saying, Aw, thanks, y'all.

Now if we could just get him to hold out longer and not have fatigue or need a wheelchair, it would be great.

I'm still praying his stomach comes back so he can get rid of his intestinal feeds and his tube and be able to eat and drink by mouth one day.

Also praying his bladder and bowels come back so that he will not need to be catheterized one day.

Will you pray for those things with me, please?

Lisa's accounts of Colin's symptoms frequently don't match up with what Sabrina and Michelle remember.

And in many instances, they also don't match up with what is captured in photos and videos from the same time.

There are multiple videos of this make-o-wish trip where he, and I remember this, like he was singing and dancing and playing and he's running around and he's playing these little like drums like he is full of life and full of joy and he's on this feeding tube and he's on all of these medications and he's still full of life and full of joy and just being a kid and i know disabilities can look different i know illnesses can look different but it is so hard for me to truly believe that this kid is running around playing having the best time in the world

seemingly looking like he has no issues whatsoever other than the feeding tube that you can clearly see out of his nose,

and it does not add up to me, and it does not make sense to me.

And I know she used to say there were good days and bad days,

but it just makes no sense whatsoever.

I know on the Carrying Bridge, she talks a lot, I think, about the make-a-way strip, about how tired out he was the whole time, and how he would play as much as he could, and then he would get really tired out.

I don't have any memory of that.

I mean, I remember there being a few instances, but looking at it now

and this sounds horrible to say out loud

but looking at it now he looks drugged like there's even a picture of his vacation on the beach

and one picture is literally him opening up birthday presents and having this blue cupcake

or with blue icing

and then in this next photo

he's in his wheelchair on, but on like a bridge on the beach.

And in this photo, he has a tint of blue icing on his mouth.

So you can tell seemingly it's the same day and he's in his wheelchair.

As Michelle explains, the family went on a make-a-wish trip to Disneyland in October of 2009, a little over a year into Colin's illness.

On her blog, Lisa paints a bittersweet picture of this trip, saying that Colin barely has energy to enjoy himself.

However, videos from this trip that Michelle shared with us show him running around, going down a slide, and even scurrying up a rock climbing wall.

There are also the constant claims that Colin can't eat by mouth, though there are pictures and videos of Colin eating throughout this time, and in some of them, his feeding tube is visible.

The only way I can describe it is the kid looked drugged.

And I can't.

I have a really hard time wrapping my mind around that.

And

I would love to believe.

I would love proof.

I would love for her to give me some proof and some reason as to why it looked that way, and some actual evidence of the opposite.

Because I would love to believe anything else besides what it appears to be.

And what it appears to be is that she was doing this and she facilitated all of this.

And I would love to be able to believe anything other than that.

Mom, Dad, I humbly suggest you save some money and shop Amazon for back to school.

It's for my growth, meaning my body's growing at an alarming rate.

And clothes you buy me this year will be very small very soon.

Plus, the clothes I love today will be out of style tomorrow.

But at least your wallet doesn't have to be my fashion victim if you shop low prices for school at Amazon.

Hopefully, this is helpful.

Amazon, spend less, smile more.

Mom and dad, the school supplies you buy me this year will mostly end up in my mouth.

Maybe shop low prices for school at Amazon so I don't eat up all your money.

Just something to shoot on.

Amazon.

Spend less, smile more.

From Michelle's communications with her parents during this time, you can see that the dissonance is growing for her and that she's thinking about what her mom did to Angelin.

And the whole thing just becomes too much.

So yeah, I was just kind of going through some like just really like

I mean, I think a lot of your typical angsty, rebellious teenage stuff, but then on top of like a lot of trauma too.

So I think added to that and a lot of just like

spiraling and

asking for help because I didn't know how to like at one point when I was 17 and I was still living up there I tried to commit suicide and I swallowed a whole bottle of pills and

my boyfriend at the time

called me right after

and he was just like

What's going on like I feel like he just knew and like I don't even know how else to describe it like in that moment, but he just like knew I think and um

he was just like you don't sound right what's wrong what's going on and like i'm just like i'm fine like whatever and i'm just like trying to go to sleep and like um

he was just like no you're not like what's going on and he finally like drug it out of me which was probably very traumatic for him like looking back on it now like um

and he called my mom and told her and my mom came in and started like yelling at me and was like um like is is this real?

Like, how could you do this?

Like, your brother's fighting for his life and you're trying to take yours.

And Very just like, she made my dad drive me to the hospital, wouldn't even go with me.

And

yeah, so I went to the hospital and they like medically cleared me and everything.

And

I ended up in a psych ward there for like, I think it was like 72 hours or whatever, like the thing, I think it's 72 hours there.

But that was pretty traumatic.

And there's still like a part of me that feels guilty because it's hard for me to completely remember exactly everything that was going on with colin because i'm like

i was treading water emotionally you know i was like kind of drowning michelle coped by throwing herself into an independent life she ends up moving out and finishing high school on her own but she kept close touch with the family and she tried to be there for her siblings I do remember he kind of like

regained his eyesight, but I do remember him talking about having a lot of pain with his eyes so that was like a big thing because like it affects your optic nerves

and so I remember him talking about his eyes hurting him a lot

I remember he

or what you know kind of what we were told but like

he lost control of his stomach muscles and like that's the one that I think

Really like just hit me like a ton of bricks like the most like I remember fast forward in a a little bit like after I had

I was pregnant with my daughter and I had met them I had already moved out of the house but I had met them for dinner somewhere and

I think it was like my birthday or like something

and

somebody's birthday and we had gotten like a you know they bring up a little dessert and like and all this and um

they brought it out and he's sitting in his little wheelchair and he just looks at it and he stopped and he just like put his his head down.

He said, I just miss it sometimes.

Talking about just the ice cream, like the food.

And like that moment broke me.

After Michelle finished high school, she started her own family, getting engaged to her boyfriend and then giving birth to her daughter in August of 2011.

There is a beautiful photo of Colin holding his tiny niece just after she was born.

And Michelle has a vivid memory of this day.

It's like I distinctly remember

after I'd had my daughter and my parents, they all had like come to visit and my mom had went to go

kind of do something with her sisters.

And so my dad and my brother came over and he came walking into my apartment, just like a normal kid, just like walks in.

And they're there to visit.

And like he was like playing on my like Nintendo, whatever it was, the Wii or something then.

And

My mom came back later and walks in the apartment and is like, oh my god, where's his wheelchair?

And is like, why did you let?

And it's like fussing at my dad.

Like, you know, you can't let him leave without his wheelchair.

Like, where is his wheelchair?

Like, and we're all just sitting there like, you know, he, he walked in, like, he's fine.

And she's like, no, you don't understand.

He's going to get so tired out.

This is going to ruin the next two or three days for him.

Like, he's not going to be able to function now because he's going to be so tired out because you didn't bring his wheelchair.

Like, he never should have walked in here.

And like, I remember even then having that moment of like,

that.

It's not right.

Like, you know, um,

and so they were always like, What do you see?

Like the things you see and like the things you know that you see, right?

But then she comes in and says like that.

And it sticks with you in the moment.

It's like, well, that doesn't feel right.

Like, you know, like, that's not right.

But then how far do you take that?

You know what I mean?

Is it like, oh, is she just a, and like it seems crazy to say that now, right?

Like

all the signs are there.

that she's made these children sick.

She got literally caught making her child sick.

And so to sit there and still try and reason reason with it in the moment is like

it makes you feel crazy I mean I saw him walking with mom all nights he's been fine he's been sitting here all afternoon fine he's not complaining about his eyes not one time like he's not like he's seems to be functioning as like this normal kid

and then she comes in fussing about

not having his wheelchair and is it is it nefarious or is it just well she's really worried about him like it's easier right to believe that she was just really worried about him.

And like, maybe that wasn't the most appropriate way to handle it, but like, at the end of the day, she's just concerned, even though logically, you know that's not true.

Interestingly, this incident happened during a lengthy hiatus from Lisa's Caringbridge blog, which lasts for nearly five months, from April to September of 2011.

During this time, Lisa appears to move her focus away from Colin, using her social media instead to reiterate some anti-vax sentiments, post some seemingly supportive messages about Casey Anthony, who was acquitted for child murder in a widely condemned verdict, and posting about a pageant mom who gave her eight-year-old daughter Botox.

Lisa says, quote, this should be abuse.

For the record, I agree.

However, coming from Lisa, a bit ironic.

Lisa does post a few things about Colin's health during this time, but they're noticeably rare.

And there were several instances in the months just before this hiatus that caught my attention.

The symptoms Lisa describes during this period are often not related to NMO.

Colin has yet another life-threatening septic infection in January of 2011, and he continues to have gastrointestinal issues and complications with his feeding tubes.

Lisa also mentions some issues with Colin's heart, and then in an entry dated January 18th, 2011, she writes this, quote, There is also debate about what Colin actually has.

One doc thinks he has an immune problem that turned into an autoimmune problem.

Then there is NMO, then maybe a cellular or mito disorder.

They are driving us crazy and we just want one thing, health for Colin.

There are too many docs involved and it just gets confusing and frustrating.

Right around this time, I also noticed that Lisa wrote this somewhat opaque post, Lisa loves a vague book, about an argument with someone, where she mentions that she is right and quote, has the studies to prove it.

And this all makes me wonder wonder if there were starting to be some serious doubts amongst Colin's providers.

After all of this, somewhat abruptly, the blog goes dark from April to September when Lisa picks it back up.

Lisa starts the return from this hiatus on a hopeful note, writing, Colin hasn't had a flare-up of NMO since December.

This is the longest he has ever been with no flare.

Praise the Lord.

We are so thankful for this.

He's our miracle boy and he has amazed his doctors to have recovered all his mental function from the septic infection, which almost took his life in December-January.

A lengthy break in symptoms is normal for NMO patients, especially with the treatments Colin had been receiving.

And in fact, the frequency of Colin's relapses as described by Lisa would be highly atypical, especially given his intense treatment regimen.

But then, on the blog, Very quickly following this improvement, Lisa describes Colin entering a steep decline.

Losing cognitive function, becoming increasingly hospitalized for infections, losing mobility and awareness, and experiencing extreme fatigue.

A cluster of symptoms that doesn't typically match NMO.

There are also more signs of disagreement with doctors.

On November 11th, Lisa posted to her Facebook, quote, I hate it when docs don't listen and blow me off.

A friend comments, just remind them how much you know.

More than them at this point.

On November 23rd, 2011, the tone on Lisa's Lisa's blog has turned dire.

She writes, We were told two weeks ago not to expect him to get any better, and chances are he would continue to decline.

We were told to start focusing more on his quality of life and try to make things as easy as possible for him and for us.

These are things we have had in our minds for a while now, but have been afraid to speak the words out loud.

Lisa doesn't say which doctors told her this or why, but on November 29th, she writes about consulting palliative care, and by early January, the conversation has turned to end-of-life hospice care.

She writes, His wonderful home health nurse recommended we call hospice care in.

His doctor had agreed it was the right timing.

We have known for a long time this time was coming, but for it to be here is extremely hard to face.

Lisa emphasizes at this point that they're not giving up on Colin, but her tone is solemn as she describes filling out the hospice paperwork and considering end-of-life care.

To give some context here, the line between palliative care and hospice care, which is a type of palliative care, is, like so many things in medicine, extremely nuanced.

In researching pediatric hospice care, I spoke with several practitioners who explained that for children, life-prolonging treatments often continue even during the final days of life and can be delivered alongside hospice care.

This is known as concurrent care and is covered under Medicaid and CHIP thanks to a provision in the Affordable Care Act that was enacted in 2010.

That provision mandates that states provide insurance coverage for both curative and hospice services simultaneously for patients under 21.

So while it was possible for Colin to have received concurrent care, it doesn't appear that he did.

Because despite her comments about not giving up on him, Lisa was actively planning for Colin's death.

By the 18th of January, Lisa is already talking about Colin in the past tense, asking people to share their memories of him and how he influenced their lives on her Facebook.

On January 25th, Lisa emails Michelle with a link to a casket that she's designing for Colin.

Now, in my research on child loss, there is a range in how people deal with this situation.

Some parents find comfort in making plans and thinking through the details.

Some don't want anything to do with it.

However, given these particular circumstances, the fact that Lisa is actively planning for the death of her child feels very different because it is very unclear what he is dying of.

He does not have a wasting or terminal illness.

The guidelines for hospice care outline that someone must have a terminal illness with less than six months to live, but there is room for nuance here as well.

As a very experienced provider I spoke to said, the guiding question for doctors in pediatrics is, would you be surprised if this child died in the next six months?

And while there are healthcare workers still involved, once a child is in hospice care, parents are given even more direct control over their care.

And as Sabrina remembers, Lisa had these providers wrapped around her finger.

Lisa got really close with the

home health people.

up there, kind of even more so than she did with Angelin when Angelin was in Savannah.

So she had them kind of hoodooed that she knew all this.

There was a lot of people from their community that was also there in that neighborhood that were there.

But

he was getting feedings.

And then the next thing I know, she called and said, well, they said he don't have much time left.

So we're going to take him off feeds.

And I'm like, well, if you're going to take him off feeds, how long?

You're saying to me, that's triggering 24, 48 hours.

You're expecting him.

And they would put him on and off.

So it was like, I would get the call, like, and this happened multiple times.

Like, they're calling the family in was like what they would say.

Like, they're calling the family in and that happened multiple times like i made multiple trips but when they would put him back on the feeds they would only put him for like a day yeah it would be like a day or two like a day no more no more than about 36 hours that they would put him back on feeds and they would take him back off

that is the it's inhumane it is just cruel and inhumane I asked my sources whether there was any reason a child would be taken on and off their feeds this way.

And while they told me that this can happen, it's not for the reason that Lisa appears to have given her family.

The providers I spoke to said that they might take someone off feeds if they were having pain because of them, as the chief goal of hospice care is comfort, but they would never take a child off feeds to hasten the end of their life.

These providers also emphasized that the removing of feeds is one of the most agonizing decisions for a parent to make because of what it symbolizes, the removal of nourishment, giving up.

Lisa describes Colin on her blog as being ready to be with Jesus, as accepting his fate.

But Sabrina recalls something quite different.

You know, at this point, he's so weak and frail because he's been off feeds for so long and he's been in this same state of, you know, she's my mama, I trust her.

But in my mind, I think he knew, in my mind,

I think he knew his mama was the cause of him being so sick.

And I say that because

he would,

from January,

when we got the initial call he's not gonna make it the family's being called in

he started telling me like

stuff like but she's my mama like he wouldn't like he wouldn't elaborate on it it would just be like but she's my mama

and I would just

what what are you talking about

hey baby she's my mama

and I'm like,

okay, but I don't understand what you mean.

And he would just repeat, she's my mama.

And I said, Colin, is

you know what's going on?

What are you trying to tell me?

He said, Hey, baby, she's my mama.

And I'm like,

Colin, just know ain't baby love to you more than life itself.

And he said, I know, but she's my mama.

And

at first I thought,

okay,

you know, maybe he's trying to tell me that she's my mama and I need you to look after her, you know, because something's happening to me and I'm going to be gone and I need you to look after her.

He would say stuff like, do you have to go?

And I'm like,

I kind of translated it into being, it's a little more bearable when you're here when you're around me

then I mean it just got more every time you went it was do you have to go please stay just please stay with me can you stay a little bit longer and so we would stay later and later and get home later and later and

you know but it just welled on me like

but she's my mama

But she's my mama.

And the closer it got towards the end for him, the more avid he became of

she, but but ABB, she's my mama.

like I just can't believe the person doing this to me is my mama

and I mean those words just I can hear him telling me just as clear today is what he did all those years ago that she's my mama that she's my mama

the idea that Colin might have known what was happening to him is an unfathomable horror and his dawning awareness may not have been incidental.

I have noticed in my research of these cases that there are ages where a perpetrator seems to make a sudden increased drive towards hospice care and death.

Five or six is an age that comes up a lot.

My niece, Sophie Hartman's daughter, and Hopiubara's daughter.

Around 10 is an age that also comes up, as with Mary Welch's son, Maya Kowalski, and Colin, who's nine years old at the time he enters hospice.

And these are just some of the examples we've covered on this show.

There are many others that seem to fall into the same age bracket.

It has occurred to me, especially because I have very direct examples with a daughter who is six and a niece who is nine, that these are ages when children take dramatic steps towards independence, when they become harder to control.

Was the lengthy period of Colin's remission and the uptick in those around him noticing his lack of visible illness a sign that Colin was becoming less compliant?

Was this the reason for his ultimate turn for the worse?

And what about this tension with doctors that Lisa hints at?

The renewed look at his NMO diagnosis.

Were people starting to catch on?

Was Colin starting to catch on?

And he loved her because she was his mama.

But I know he was trying to tell me that this is my mama's doing, that this is what she's doing to me.

When your kid is on a continual feed and you take that nourishment away from them,

they're going to get weaker and they're gonna die because you're not giving them anything.

He wasn't even getting a drop of water,

but he got to the point he was begging for suckers,

blue suckers.

He wanted blue suckers, and I'd sneak a blue sucker in.

And if he wanted to take a lick, he was taking a lick.

And if he wanted to hold it, he would just hold it.

I didn't care.

He wanted a blue sucker, that's the one thing I could do.

He was getting a blue sucker.

So the last time we saw him

alive,

he told me,

he was still on his stance, but she's my mama.

But he said, baby,

I want you to know that I love you.

And I love Uncle Wesley.

And I love Kayleigh because she's my best friend.

Don't let her forget that she's my best friend.

And don't let Mason forget that he was supposed to teach me how to play ball.

And tell Brianna she needs to work on her jokes because she's not as funny as she thinks.

He said, but I love you more

than anybody

that's an adult.

He was comical.

He was funny.

He said, but I love you more than anybody that's an adult.

Because in his mind, Machine was a sister.

She wasn't an adult.

And I was like,

and he did me, he said, and don't forget to tell Armand that Uncle C loves her.

And I'm like, okay, he said, but I will see.

He said, I ain't going to see my mama and my daddy again.

He said, I'm not going to see them again.

Mom will see you.

I said, Colin,

tell me why you say that.

He said, Colin, ain't D.B.

When I die,

I'm going to see Jesus.

And he said,

I know one day you're going to get there too, but my mama and daddy ain't going to make it there.

Oh my God.

I'm sorry I never said it out loud to nobody.

But

I say that to say this.

When you have put a kid through so much hell

that they can look,

I guess, at a person that they know is a safe place for them.

And they can tell you that their mom and daddy ain't gonna make it to the gates of heaven.

That says

a lot.

There are moments from this show that I know will stick with me forever.

And this is one.

I cannot imagine what it has been like for Sabrina to carry this with her for all of these years.

And I'm honored that she trusted us with this memory.

Michelle wasn't feeling so sure about religion at this point in her life.

She was a brand new mom in a mess of grief and hormones and confusion.

She wasn't sure about a lot of things, but she was sure that she loved her baby brother.

The last time I saw him,

I think everybody had really gone to bed and I was sitting in the room with him and I was laying in his hospital bed with him and he was like trying to play his little Mario game and

he stopped and he turned it off and he looked at me and he said, now keep mine, I'm in the middle of like deconstructing at the moment and my husband at the time was like

very

anti-anything religion.

So I'm just like all twisted up inside about what I believe in all this.

And he's laying there and he said,

Michelle, do you

believe when I die I'm gonna go to heaven?

He's like do you believe I'm gonna go to heaven?

And I said yeah, baby.

Like you're not going to look at a nine-year-old this time.

And he knew it was dying.

Like, he knew.

And he said,

Are you sure?

And I said, Yeah, I said, You're going to be okay.

And he said, Okay.

And he gave me a hug.

And he said, Thank you.

He said, You help me not be scared anymore.

On March 29th, 2009, four months shy of his 10th birthday, Colin McDaniel passed away.

Neither Michelle nor Sabrina had the time nor the hindsight that we have now.

They didn't know that the rate of recidivism in Munchausen by proxy is astronomical and that it's one of the most deadly forms of child abuse.

They hadn't gone through the discrepancies in Lisa's story with a fine-tooth comb or cross-referenced her story with expert input about Colin's alleged diagnosis of NMO.

During this time, Sabrina and Michelle were both working moms who were trying to be with the nephew and brother they were told was dying.

And that kind of examination is a full-time job.

Neither of them knew what I can tell you now, that the odds of Colin even having NMO were less than one in a million, and that the odds of him dying of it were far less than that.

And even with all of that, the manner of his death that they were witnessing does not remotely match the clinical picture of NMO.

All Sabrina and Michelle had while this was happening was their doubts and their fears about Colin.

They knew what Lisa was capable of, and yet the courts knew this too, and they'd seen fit to give her custody of her children.

And the doctors had signed off on this.

There were home hospice nurses monitoring it.

Dr.

Jane Ness was there at the house, in one instance, even cleaning Lisa's oven for her.

If they were so convinced Colin was dying of NMO, who could question them?

Every system had failed to protect him.

In 2002, when my brother was born, I guess CBS had stepped in then.

And I mean, I literally wrote it down because it was so profound to me that this was worded this way.

And it literally says, in the event that this child, talking about my brother, becomes unusually ill it'll be reported to their courts immediately a year or two later my brother's sick and we're moving across state lines so that's that will I think always stick with me because

no matter how you slice it like

best case scenario

it could have prevented an illness and potentially a death or he was sick the whole time and having some sort of oversight there could have really healed a lot of people you know if he if if everything my mom has ever said has been true about him and he was legitimately sick he legitimately had this thing and there was no foul play at all

then having some sort of oversight from the courts or from cps or anybody to say to kind of monitor that would have meant worlds to i think all of us i know especially me but like my whole family to just have that like peace of mind

the approval process for pediatric hospice involves sign-off from the medical director of the hospice and at least one treating physician.

So how did Colin, a child who did not have a terminal illness, end up in hospice care to begin with?

Michelle went straight to the one person who might be able to answer this.

Hey, this is JMS.

Hey, how are you?

I am good.

How are you?

That's next time on Nobody Should Believe Me.

Nobody Should Believe Me is written, hosted, and executive produced by me, Andrea Dunlop.

Our supervising producer is Mariah Gossett.

Our senior producer is Taj Easton.

Assistant Editor and Associate Producer is Greta Stromquist.

Research and Fact-Checking by Aaron Ajayi.

Engineering and Mixing by Robin Edgar.

And Administrative Producing by Nola Carmouche.

Music provided by Blue Dot Sessions, SoundSnap, and Slipstream Media.

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