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Oct. 19, 2023 - David Icke
35:11
A Desperate Mother Fights The Medical Establishment - A Fight For Autumns Health - GI Tonight
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Welcome to a Garethite Tonight special.
This week, we received an email pleading us to share the story of a four-year-old child called Autumn Shawl.
Autumn was diagnosed with an E. coli infection at the emergency room and then was transferred to Lucille Packard Children's Hospital in Palo Alto, which is in California, where, according to her family, she was labelled a case study.
Her mother, Hope, says that the hospital, against the family's wishes, then administered a cocktail of medications that have caused Autumn's health to decline dramatically.
Hope wants Autumn's story to be shared as widely as possible.
Hope, thank you so much for talking to us.
Can we start at the beginning?
How did how did all of this come about?
So about a month ago, my son had diarrhea for a few days, and he was in great spirits.
So we just figured it was a little tummy bug.
And a few days later, my daughter started complaining that her stomach hurt, but she couldn't go to the bathroom.
Um, that's not totally abnormal for her.
She has a sensitive constitution.
So, um, we had, uh, higher victims before and her nervous system and everything.
Um, you know, we've always just tried to support her.
Tell me if she, if she gets, you know, upset in the past, but we figured maybe something was coming after my son had had that bug.
And so.
The next day she wound up throwing up and my husband came home and then what started was diarrhea every 20 minutes around the clock.
So I knew that was unusual especially because my son hadn't been that way and we wound up going to urgent care after about three days.
And when we were there, they heard about my son and they discussed how I'm seeing a stomach bug.
But two more days went by, so this is five days of every 20 minutes, no one is sleeping.
And they mentioned intussusception, but they say that they can't diagnose that at urgent care.
So you need a CT scan or an ultrasound, which they don't do for pediatric.
Intussusception is like a small prolapse and it's usually resolved with an enema.
So, they told us to go to the emergency room.
When I looked at the symptoms, it was diarrhea every 20 minutes.
So, I figured that's what it is.
It'll be easily resolved and we went to the emergency room.
They told us that she... the local emergency room.
They told us that she didn't have intussusception based on the diagnostics, but they did run a stool test and they told us that she had E. coli and They did not treat pediatric E. coli at the local emergency room, so she would have to go to the children's hospital that was closest to us.
Many years ago, I actually worked as a therapist at this particular children's hospital, although at a different location.
I'm not a big fan of teaching hospitals, so I didn't have a lot of confidence going into it.
Before we left the local ER, they told us that they had consulted with Lucille Packard on her labs and that we should start an aggressive diuretic, which at the time they didn't label it that.
They just told me that she needed to take something called Lasix because the E. coli can produce a toxic byproduct that upsets the kidneys and you want to To flush that byproduct out.
So, the nurse there had told me, you know, within 20 minutes, you'll see a large urine output.
But we haven't actually had a significant urine output, despite her having diarrhea.
I thought, you know, before she was going to fill up a urine sample, that she wouldn't be able to, given that she had diarrhea for five days.
But when I said, no, she was urinating fine.
Um, and so, uh, you know, cause small children, they can't separate, you know, diarrhea from urine.
So before when we had been at urgent care and trying to get them a stool sample, it was difficult, but the emergency room.
She didn't have any difficulty with either, really.
And so, when they gave her the Lasix, the nurse had told me, you know, within 20 minutes, you'll see massive output, and we did.
It was a lot of diarrhea and a lot of urine.
And I remember feeling, that's a lot on a four-year-old.
But she was still urinating by the time that we got to Lucille Packard, so they transferred us in an ambulance.
And because she'd been having diarrhea every 20 minutes, we had been putting her in cloth diapers.
She's four, so she normally doesn't wear diapers anymore, but her cloth diapers were soaked by the time we got to LusoPackard, so tons of urine still.
And right when we arrived, they said to us, you know, that She'll be the case study of the week and, you know, just so we're clear, like, you know, like, she could die.
And these are things they're saying in front of her.
So she's, you know, crying and saying, hold me, hold me.
And, you know, they start to talk about the medications that they're going to want to continue to administer, which are diuretics to flush the kidneys.
So if you'd like, I can keep going if you have any questions.
Yeah, I was just going to ask, at what point in this did you start to feel uncomfortable with how they were handling it?
Well, immediately I said, you know, like, I actually asked them, like, everyone's nervous systems right now are really high.
Like, can we bring this down?
Because, you know, it wasn't like we arrived and they were like, hey, there's, you know, there's a lot of complications that can occur with, you know, this type of infection and the syndrome that we might label your daughter with that can impact the kidneys.
But we're going to take the best care of you that we can, right?
It was not that at all.
You know, they're pushing, you know, stuff about lifelong kidney injury, which I would go on to find out, you know, is actually a major side effect of these diuretics that they're pushing.
So, really right off the bat at Lusco Packard, I actually thought that the care at the local ER was much kinder, even if they were concerned about the E. coli infection.
Why do you think Autumn's situation is being called a case study?
Because, I mean, I'm not a doctor, but an E. coli infection isn't a rare thing, is it?
I mean, I've heard of that.
Many times before.
Well, I guess the response that they were saying her kidneys were having is considered much more rare, right?
Like, they're basing this off her lab work, and so her response versus my son, who, you know, he was in great spirits, he was fine, and my daughter's system really was under assault from the infection, right?
Like, it was trying very hard to get everything out of her.
So I think that they label that syndrome HUS.
I think it's called hemolytic urea syndrome.
And that's based on, you know, how the kidneys start to decline and things like the creatinine and urine nitrogen go up and her blood, you know, she starts hemolyzing.
But a lot of that seems to really escalate rapidly as they start administering these cocktails to her.
Of diuretics.
And she actually goes on to, you know, as soon as they start, they'll say, my daughter's never even been on Tylenol.
And so I'm asking that they pace them and I'm being told that I am resisting her treatment.
And she actually goes on to throw up blood.
And so they do like Lasix, they add in diurel, and then they put in a medication called aminophilin.
And after the aminophilin, she threw up blood.
By the time they did that, she threw up blood again.
And so, you know, this whole idea of a case study to me is this is the teaching hospital.
And so there was almost excitement over the decline in the condition and how severe it can get.
It felt like almost like a giddiness.
And as a therapist, I'm a marriage and family therapist, I've always said that, you know, people who are attracted to intensity, they almost feed off of it.
So when you're Working in these environments, I think that it's a reflection of something that you're attracted to.
So when when they administered these these drugs, and Autumn started, you know, feeling worse, and obviously, you've said that like throwing up.
Did they stop?
Did they stop the drugs at that point?
They did stop the aminophilin at my insistence, but unfortunately, so her urine output is becoming almost nothing, right?
So we arrived here, she was urinating fine, even to the point where, you know, I thought she had been dehydrated before the local emergency room and probably wouldn't have a ton of urine output based on all the diarrhea, but she was still, you know, she was drinking fluids and she was having a lot of urine and Very rapidly, she stopped urinating.
The next step that they wanted to complete was to have a Lasix drip, which is basically continuous diuretic.
They told us this was the last effort.
She's not really urinating anymore.
They told me that she would have a bladder catheter, so a vaginal catheter.
To me, that just seemed extremely traumatizing for a four-year-old, especially since she isn't peeing.
So why would we do that?
And so I said, you know, I understand that we could maybe do a bladder scan.
And if her bladder is full and she's not urinating, then perhaps a catheter.
But they told me that then I wouldn't be welcome in the ICU.
And if she does need dialysis, because that, you know, is the end result of kidneys that no longer function, that I would just have to be medevaced with her somewhere else.
So we felt coerced that we wouldn't get the care that we needed unless she had a catheter.
And so we proceeded because, yeah, we were kind of in a hostile environment.
Why do you think they're doing this?
I honestly think that, like I said, with a teaching hospital, I think they I see it as almost like an opportunity, and that they really, like when I was trying to say, like at some point I said, you know, if this is all leading to dialysis, right, because I'm not seeing any more urine output, doesn't it make more sense to not continue to assault her kidneys, to not force them to do anything anymore, and maybe just move to dialysis where her kidneys get a break, where she gets a break from medication,
And it just filters her blood for her.
Not that I want her to be on dialysis, but at that point we're not having any urine output and her kidneys are upset.
So how does a constant drip of this make sense?
It doesn't make sense to me.
You know, I know that they're giving her IV fluids, so technically they're trying to justify input versus output, but they're not outputting.
So that was a concern.
Things continue to escalate and I'm happy to go on but I do want to share that also when we arrived they talked about the possibility when you're looking at dialysis for a transfusion and so my husband and I had been asking you know continuously like okay well we want her to have our blood you know we want to do direct donor blood how can we make that happen and they would say well you know that takes a long time we'll contact the lab on It usually is five to seven days to set it up and then there's a long turnaround and so you know really trying to make it impossible for us but saying you know but they'll call you today.
So that happened for a few days and then around the same time that we're looking at dialysis they're telling us that she is hemolyzing and she will need a transfusion and they give us certain parameters and That she would have to meet to avoid that.
But it's not looking like she would be able to.
And so my husband is the one who finally finds the supervisor of this lab.
And he's able to get in within 30 minutes.
Within 30 minutes.
So we're told days, right?
And they told us that it would usually be a three-day turnaround.
So we're hoping that Autumn can hold out at that point in order to get her dad's blood.
Because no matter what, you sign away You know, you signed all the liability off of the hospital if you were using blood that, you know, is just through somewhere like the Red Cross, like, so that includes, like, all the paperwork that you signed.
You're assuming all risk for things like HIV or any transmittable disease, but also, you know, I don't know this person that's going to be sharing blood with my daughter.
I don't know much about donating blood, Do they smoke?
Are they heavy drinkers?
What kind of lifestyle do they live?
And is that really going to serve my daughter's health, versus her father, who I do know, or other donors that we could ask to help our daughter.
So that was really concerning, is that we've basically been pushed off from our wishes, and how doesn't that serve my child, the best interest of my child, to have her father's blood?
It was just very odd to me.
Did you think that they're listening to you at all?
Or is this a case where the hospital was basically taken over and you're almost just, you know, you can come along and spectate if you want, but just leave it to us.
Yeah, it definitely had that feel.
So people kept sort of like taking me out privately to talk to me about the blood and about my concerns with the catheter even, just very dismissive to
the point of, yeah, just as though we're at the bottom of the totem pole, right? And I
did reiterate to them, like, you know, I used to work here. So can you speak to me as
though I'm not ignorant and with a lot of respect because I, you know, I understand how medicine
works.
And while I don't specifically know the kidneys or this syndrome, I understand medications and side effects.
I understand my daughter's constitution, and so your standard of care is generalised, but my job as a parent is to individualise her care.
But that was just met with hostility from the start, so you'll see if we continue with the details of her story that it just gets a lot worse.
How is Autumn at the moment?
Because I can see from the background you're at the hospital now, aren't you?
Yeah, she's not great.
I felt like we get to this place in her story where she winds up on a ventilator without our consent and I felt that she was sort of set up to fail for extubation, but there's been pressure on the hospital to justify the ventilator.
And so they did it on her, but she was very, very heavily sedated from just mega drugs that I was not comfortable with.
But, um, we're just really praying to get to extubation.
Um, and so now she's, you know, weaned off sedatives, uh, because yesterday I, I demanded that that's, you know, something that we wanted to prioritize because how is she going to be able to breathe adequately when she, you know, her eyes are rolling in different directions and, um, yeah, it was just very alarming.
So, you know, currently, uh, they're wanting to keep her on, um, BiPAP and they just have a continuous, uh, you know, threat.
Have they spoke to you about any of these things?
Because, you know, just from the last three years with the whole COVID situation, you know, I'm aware of what ventilators can do in terms of damage to a grown adult, let alone a four-year-old child.
They must know that this can potentially cause problems.
Well, I mean, by the time we got to the ventilator conversation, there was a lot of erosion of trust.
I mean, you know, we skipped some parts about some procedures that were done inaccurately in order for her to get dialysis.
They're having me restrain her while she's, you know, While they're trying to repair some things and get it to coagulate.
This happens multiple times.
We wind up demanding they take the port out to put in a different type of port and then she finally urinates.
But, you know, they claim some things like charting errors for making me do push fluids that wound up with a lot of fluid accumulation.
She wound up with six pounds of fluids.
eventual end result winds up with her having a seizure. So, during this whole time, I'm not
really trusting what they're saying. By the time we get to the ventilator conversation, they're
telling me that the ventilator will... Sorry, I laugh because it just seems ridiculous to me,
but they're saying that the ventilator compression will move fluid out of her lungs.
And, you know, I've spoken at this point, I've been working with medical advocacy groups to talk about, you know, just the medications that she was taking to get an understanding of, you know, the kidney numbers.
And then I spoke with some pediatric respiratory therapists Who confirmed what I thought, which is that ventilation is more of a stopgap.
It is not a treatment.
And so, when I'm talking with the doctors about that, you know, they're very much brushing me off.
And then, you know, I say, well, I'm not seeing the needle move on the ventilator.
We want to get her off the ventilator.
So, what are the next steps?
And we're told, you know, that's an evolving conversation.
You would be looking at something Diuretics.
So again, that's that cocktail that they started her on.
And, you know, she's good for the night with the ventilator.
She's good for the night.
She's in a good place with that compression of air, you know, over time moving the fluid out.
But then the story, you know, kind of evolves into they actually administered That drug that we had worked, you know, at that point for 10 days to avoid.
I had consulted with some doctors through those medical advocacy groups on a much gentler diuretic and I had been refusing that in the middle of the night without my consent.
So, you know, things escalate from that point because I had even told the doctors and the night nurse that I wanted to be notified of any new medications.
So they, you know, told me they woke her up for a diaper change and they gave her fentanyl because I have a high tolerance to sedation and she's not responding well to sedation.
She's not remaining sedated the entire time she's ventilated.
They're having to PRN and bolus her with constant sedatives.
And so they wake me up for those things, they wake me up for the additional sedatives, but when I woke up one morning around 4 a.m. I said, wow, her heart rate is really high.
And the nurse said, yeah, I just had to give her more blood pressure medication.
And I said, well, what changed?
And he said, well, I gave her the Lasix an hour ago.
So obviously I was I was livid because I don't believe that is legal.
I don't believe that is legal.
And that is what I said to them, is that, you know, I was told it was an evolving
conversation.
Why would you not wake me up to talk about introducing diuretics when you insisted that the ventilator will move the fluid through compression?
Um, but additionally you would administer it without my consent.
And if you had looked at her, um, her chart, you would have seen them.
The only, uh, The only diuretic I'd been consenting to was hydrochlorothiazide, which works at a much slower pace, right?
So when we talked about Lasix in the beginning, it was like that within an hour, that max output, whereas hydrochlorothiazide takes about four to six hours.
So it is gentler on the kidneys.
So when I said that I was going to be filing a grievance, because like I shared, so many things had led up to that point of feeling that my daughter's health was in jeopardy instead of What?
being cared for, that within 24 hours they call it CPS, so Child Protective Services.
What? There's such an arrogance, isn't there, about the medical profession in general, but
certainly in this situation where they think they're the parent, they think they're in
charge, and if you dare question it, then all of a sudden child services need to be
It's absolutely horrendous.
So what have child services said to you?
Have they contacted you yet then?
So yes, so that next day they showed up and it was interesting because the night before that I had, they wanted to put a PICC line in my daughter, which is a line that runs through the leg and up to the chest.
And I had said, well, she just had three IVs put in.
I don't think I'm comfortable with that tonight.
I'd like to talk to my husband about it.
And, you know, if that becomes a necessity, then, you know, I'd like to discuss it further.
And I was told verbatim that Well, it might be an emergent situation, so we would have to wake you up in the middle of the night.
And I said, that's fine.
That's my job.
I'm her mom.
And they said, well, you might have a few minutes to decide.
And I said, okay, well, then I will make that decision then.
The next morning, the neurologist also came to speak to me and had said that there was an anti-seizure medication that they would recommend, yet it impacts kidney function.
And so that was something for me to consider.
And so I spoke with some patient advocates to understand this medication and a potential alternative.
And I wanted to speak with the doctors about it.
So I was asking the nurse to text the doctors so that I could speak with them about it.
And she sent them some text messages.
But I didn't say what type of alternative I was looking for in terms of information about the anti-seizure medication.
...shows up and they tell me that the two issues that they were called about were the PICC line, that they're saying that I declined it, and that I declined all seizure medication, which was a necessity for my child, which was not how the neurologist framed it, and that I had not declined either of those things, but I had asked for further clarification on them, right?
So, they wound up bringing the doctors into them.
Now, at that point, CPS had written down some notes for me, and I had talked to the doctors right before they came in.
And so, when the doctors came in, I defended myself about the pipeline, and I brought up the seizure medication.
And she said, well, the only reason I didn't come talk to you yet this morning was because I need to speak with your request about the Lamictal.
And I said, well, I didn't mention to the nurse that it was Lamictal, so you're only hearing that just now from Child Protective Services, because I brought that up right now, and they told you outside.
So, obviously, she was lying.
So, they're saying that Lasix would be life-saving, and I ask instead, because we had worked With the nephrology team before we came to you after her seizure, if we could maybe look at another thiazide, because she had been doing okay with the hydrochlorothiazide, the gentler option.
Now they have a faster acting option, which is the Diaryl, which was a part of the cocktail when she first got there.
But, you know, it's kind of in the same drug class.
And so in that meeting with CPS, they said no.
And we also asked for a culture because I was concerned that when she had been, there was a day where they made me push fluids again and she was having rapid output for all the water she had accumulated, which led to her seizure.
So she was having like a liter every three to four hours of output and they wanted me to push a liter and a half for her to drink, which that was the equivalent of five liters for an adult to consume.
And I was concerned that maybe she had aspirated on the fluids when she started throwing up water from how much they were pushing on her.
And they refused to test her for infection in that meeting with CVS, claiming that they didn't want to just throw antibiotics at anything.
So I was a little confused because they've been throwing a lot of medication at her, not that I want her on antibiotics, but infection is a concern when you're So, we're copying, right?
We're looking at the seizure option into seizure medication, which they said they don't recommend.
The one, the alternative I looked at, they are recommending a pig line, and they want to start a diuretic, but they're saying, I can't start the one, and they want infection.
Now, they leak, the resident comes and says, actually, you can do the diurel.
We will try the diurel.
And I said, I want you to confirm with the doctors that that is That is something that we can choose to start is the thiazide form.
And she does.
She confirms it and comes back.
And CPS says that they'll, you know, speak with us in the morning.
They're not in the room for the diurel conversation follow-up about how we can do the diurel.
So the next morning, or let's go back a little bit.
It's a pig line, sorry.
So later when they come to Einstein, the team that installs it tells me that, you know, they do not install a PICC line on a child who has an infection.
It's hospital policy and now she has a fever, so she likely has an infection.
And so we have to assume all risk and do we consent.
So now we're finding out she does have an infection, which they have refused to test for, and under coercion we're It feels like an absolute scattergun approach.
Like they've basically just got a book full of drugs and it's like, that one?
No, okay, that one?
It's extraordinary.
What do you believe people can try and do?
Because obviously you're talking to us and we're trying to get this out there for a reason.
Is there a way to get Autumn out of that place and into another hospital or into another place of care?
So that's what we're kind of hoping for is resources because Child Protective Services actually did call the next morning and the doctors told them that we hadn't complied.
And we did, but the doctors were saying that we hadn't.
And so we were forced to have a hearing.
Now, we weren't properly served.
And we did not, we didn't have due process because we didn't get to see what we were kind of being tried for, given that we had complied.
And I had even told CPS at that point, like, her medical record will show that we did comply, that we did do the things that the doctor asked.
And so, you know, we're, they were not able to issue a court order to remove her from our care because they couldn't court order anything.
We complied.
But they did have a stipulation about how we cannot, if we do not consent to anything deemed a life-saving measure, an emergency life-saving measure, that we will have to show up back at court.
California requires that lawyers have a dependence court course completed so
we're looking for resources because at this point you know we're concerned
about them potentially re-intubating her. We don't trust their medical opinion and
you know we want to get her to a place where she can heal especially now that
her kidneys are coming back online.
They're functioning.
There's been improvements in their function.
Dramatic improvements.
That's fantastic.
Yeah, yeah.
We recognize that she's in a good place.
And in terms of her breathing, actually, now that they've put in the sedatives, I can argue this morning that she's able to breathe better.
Her numbers are great.
And so we can't AMA though.
We can't, we can't leave against medical advice.
We can't, um, you know, find a place that we're more comfortable with at this point, if they can somehow justify that doing so would, uh, put her at risk.
So yeah, any resources in terms of, you know, guidance, um, legally and then, um, you know, on, on what they've labeled this, this syndrome and really just getting her home to heal, because I know that her, Her individual constitution with, you know, strangers constantly coming in.
She's got, she's got more, more machine in her than, like, she looks more machine than human.
You know, she's got an art line, a pig line, a catheter, uh, you know, three IVs, a feeding tube, and at least they, you know, took out the ventilator tubes.
But she has, you know, a large mask on her face, um, and when we take it off, you know, She's in a much better state than when she's just laying there.
So, yeah, we just need resources.
And we wanted to share her story because I do believe that the reason that they attempted extubation was because people have been calling the hospital and they know that we are not doing this in a vacuum, that they will have to continue to justify their actions at this point.
So people that are watching this, where can they, is there a website they can go to?
Is there an email address to get hold of you?
Or should they go direct to the hospital?
Yeah, so you can call, you know, Lucer Packard.
We ask that people speak kindly, but that, you know, let them know that the world is watching.
Remnant Nursing has been, you know, helping with our advocacy efforts and they're really A great resource to get in contact with us.
So, you know, I can provide that to you directly if you want a website.
Yeah, please do.
We can put that across the bottom so people can see that address so they can visit there.
That would be great, yeah.
Great.
Yeah, thank you.
Thank you so much.
Hope, thank you for talking to us and sharing your story and I really hope Autumn improves.
It's great that she's improving now already.
That's fantastic, fantastic news.
Yeah, we just don't want her to continue to be treated like You know, a steady subject and that means, you know, getting her out of here as soon as she's in a good place to do so.
And I worry that, you know, they'll push continuity of care and stuff with seizures and, you know, all kinds of conditions on her long term.
And I'm very concerned that, you know, they'll actually inflict even more harm.
So, just getting her out is a priority and I'm so grateful that you're willing to share her story so we can continue the effort to do that.
No, not at all.
I can't imagine what you're going through, honestly.
My daughter's five and I'm trying to put myself in your position and I can't.
It must be absolutely horrendous.
So hopefully, by sharing this story to as many people as possible, we can You know, try and help a little bit.
And thank you so much for talking to us, because it must be so emotional for you, but you've spoken so perfectly and you've kept it all together.
I must admit, I probably wouldn't be.
I probably wouldn't be.
Yeah.
That's incredible.
I feel like I have to.
She needs me to keep it together so that I can tell the story accurately and get information across.
I also feel like with the involvement of CPS, There were things that they included in the hearing to maybe make me look, uh, you know, unfit somehow.
Like, one of them was like, when she would, they would use cold wipes on her between diaper changes, uh, she would go into distress and try and grab at her tubes if she was at all relaxed.
And so I would request, you know, can we do every other diaper change with the wipes given that it's just urine?
Um, and they put that I was requesting that she be left in soiled diapers.
So, you know, I try to, I try to keep it together as best I can so that I'm speaking with clarity and that my daughter deserves better and it's not construed as just emotional mother who is uncomfortable seeing her daughter uncomfortable because that's kind of what's been implied, but I know better.
I've worked in medicine myself.
Well, I think you're doing it the right way, you know, keeping it together.
And once, you know, Autumn is home and with her family and out of there, then, then you can, you know, unleash the hounds on them.
Right.
Exactly.
Exactly.
So, um, and given the lack of due process and all that, like, uh, we, we do have the potential to really Yeah, absolutely.
Hope, thank you so much for talking to us.
if we can move quickly and then get her home so that we can all heal. We're all traumatized. I
have a newborn and a toddler and my husband here with me and we don't have any family close by.
So it's been a lot. It's been a lot on us. Yeah, absolutely.
Hope, thank you so much for talking to us. I really appreciate you taking the time to
talk to us. Thank you.
Thank you so much.
Thank you.
And thank you very much to everyone at home that's watching this.
What we'll do at the end of the show is we'll put a list of all the contacts so you can get involved and you can contact the hospital and kind of follow this story.
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