Vaccine Court is Real. Here is Porter's Story
This is the transcript version of episode 10 of the Very, Very, Quite Contrary podcast with Sarah Bridges, mother to vaccine injured Porter, who was awarded lifelong care through the National Vaccine Injury Compensation Program.
This conversation is the story of Porter's injury and a look behind the curtains of Vaccine Court, as we've come to call it, and the difficulties in fighting a system set up for your failure.
Mentioned in the podcast:
Sarah's memoir about Porter's vaccine injury and struggle with the government system: A Bad Reaction
Listen to the podcast by clicking on one of the platforms below:
Janny: Alright, hi Sarah.
Sarah: Hi Janny.
Janny: Thanks for joining me. So you're Dr. Sarah Bridges, neuropsychologist by training, is that correct?
Sarah: That is correct. Yes. My background is in neuropsych and I did a doctorate and a post doc at the University of Minnesota.
Janny: Yeah. So you're also an executive coach and you and I connected because of your work with Children's Health Defense, just a few months ago. And you had reached out to me and I heard your story and I'm like we have got to record a podcast together.
Janny: So you had mentioned to me that you had been through the vaccine court process.
Janny: And this is quite some time ago, with your son Porter in the early 90s. I'm going to let you tell that story, but from my platform I've been using for about five years, just educating my readers, my audience to be informed about their decisions, and so I've become a resource for quite a few people to get information from or have a launching pad to find other resources like Children's Health Defense. I've talked to many many parents, I never thought that these would be the kind of parents I'd talk to because I didn't even know they existed. I talked to many parents of vaccine injured children, and heard their stories, and cried with them. I've never heard the story of the vaccine court process, so I wanted to let you speak to that because there is word on the street is that a lot of the people who've been through the process that are awarded compensation are under some sort of gag order. So that is not you, you're free to speak.
Sarah: Whether I'm free to speak or not, I do speak. In a lot of ways, as we talk about this, we went through the process before the big case that went through the ombudsman case where they were looking at all the autism cases and causality with vaccines and autism. And so we skated under the radar in a lot of ways.
Sarah: It's gotten so much more tense and acrimonious and difficult in a lot of ways, and that's saying something because it was unbelievably torturous when we went through.
Janny: Right. Sarah, you wrote a book called A Bad Reaction.
Janny: And it is the story of what happened, and you telling me that it's worse than this is baffling to me. So I'm going to let you tell the story, I'd love for you to tell the audience about Porter, and from birth until what happened next with his well visit.
Sarah: Yeah. And please jump in, since you've read the book and may have questions. So I also was a very unlikely person to be involved in this issue. When I went into, while it was psychology I worked out of the med school, I was trained in scientific methods, I was doing research. The last thing on my mind was to be anyone who was not anything less than pro vaccine. It honestly didn't cross my mind to do anything but to go in and have my children fully vaccinated.
Sarah: So that's an important back drop, I didn't start out in this issue. I had a daughter, have a daughter, and then 14 months later had my son Porter, and this was in late 1993. He was born completely healthy, perfect APGAR score, eight and a half pounds, and proceeded along until he was four months old, ahead of milestones, thriving, smiley, just a wonderful kid. When he was four months old in 1994 we went in for a routine wellness check with the pediatrician and I can recall signing the forms for the vaccines vaguely, where it talks about what I thought were just theoretical side effects and different things. Signed the forms and he received eight vaccines that day, and this was ten in the morning.
Sarah: What happened was we all went to bed that night, and we were awoken, I could hear my son screaming in a sound that I can only describe like an animal being badly injured or killed. It was just the most visceral, horrible screech that I'd ever heard, and we ran down and found him unconscious, very sweaty, his head was flopping around, and had no clue what the problem was. We knew it was an emergency, but didn't know why he was in this state. And we called the nurses line, I don't know why we did that first, and she said "Oh it's just a vaccine reaction, a lot of the kids get sleepy." And I said "He won't wake up." And she said "you need to get to the hospital immediately."
Sarah: And we lived very close to it, and barreled in and got there right away, and went in and as we walked into the emergency room, this little tiny perfect baby started having a Grand mal seizure, something I'd never seen first hand. And it started and what happened was they couldn't stop it. It went on for two hours. The doctors were calling in specialists from other hospitals around the city, we had multiple doctors in the room and finally one of them turned to me and said "I'll be able to stop him from seizing eventually." They were loading him with drugs, "It's just that I'm going to have to medicate him so much that he's going to quit breathing."
Sarah: So they intubate him, I know, it was probably the worst moment of my life, we've had other scary things with him. They intubate him, they do it, he's in the ICU unconscious for days and that same doctor, I had something happen that I had never heard someone else have, which is he said "Your son has had a classic pertussis vaccine reaction, I'm going to report it to the CDC, there is a vaccine court, I don't know what long term effects are going to be here, but you just need to know that."
Sarah: And there started our trajectory that has gone on until today.
Janny: So that response by the doctor already, when I read it in the book, I thought that's kind of odd, because right now the mantra is "Vaccines are safe and effective." And you do see that come out in your book where a lot of people repeat that to you-
Sarah: Oh yes.
Janny: -as this dogma that they aren't to be questioned. But the fact that that doctor, had he seen this happen before? He called it classic.
Sarah: Yeah, classic in the sense, and even today you can go on the CDC's website and they have something called table injuries, it's in an excel table, and this was one of the known, and sadly, well-known, side effect with pertussis that kids developed a brain infection, extremely high fever, and ultimately brain injury. And I don't know whether he'd seen about it, read about it, it's what even precipitated the vaccine court starting, because there were incredibly expensive settlements happening, as they should have, with the drug makers, and this was the compromise that we can talk about later.
Janny: Okay. All right. So would this be a good time to talk about the fact that your son actually was receiving the DTP pertussis vaccine-
Janny: -not what's being given today, which is the DTAP.
Sarah: Correct. So the difference is, the "a" is acellular. He got what they call the whole cell pertussis and it was kind of like when they gave the live polio virus in the polio vaccine way back when. And one of the reasons they changed it, and as an aside had changed it in other countries long before, because of these same occurrences, was because with a live virus, the odds of getting brain infection are higher, and my son was one of the people who got it. Ten months after he was brain damaged, they did switch formally to DTAP, that said, the other type is still used globally in other places.
Janny: The DTP?
Sarah: Mm-hmm (affirmative).
Janny: Right. And the screaming cry that you heard, was that encephalitis?
Sarah: That was encephalitis, and I'm sure the fever spiking up to 106 and a seizure starting, what I know now he was in a postictal phase which just means right after a seizure where a person is unconscious.
Janny: Right. But his brain was swelling.
Sarah: That's correct.
Janny: Yeah, that's what encephalitis is, and I think a lot of nurses, pro vac, even the ones that say the same mantra, that vaccines are safe and effective, they know that reaction.
Janny: The encephalitis scream, the cry in the middle of the night, the uncontrollable, how you describe like the animal being hurt, it's a different cry.
Sarah: It's different. You know, my daughter was 14 months old, I had heard plenty of crying. It's a noise any mom would know is horribly dangerous when you hear it. It felt like someone was dying.
Sarah: Which, you know, his brain was swelling, so yeah.
Janny: So you're in the hospital, the doctors given you that information and then he wakes up and what happens next?
Sarah: Yeah. The hard thing, they're four months old, they're not talking yet, it's a little hard to gauge what's happened at that point, and he's coming off drugs. They said best case scenario is that he just had a bad reaction, and that will be that, he'll be okay.
Janny: This is the worst of it.
Sarah: This is the worst of it, you're through the woods, I remember just going around telling everyone how lucky we were. And that lasted a little less than two weeks, I was getting ready, I was in grad school and Porter was next to me, and I looked over, he was totally white, his lips were blue, he had a big ring of blue around because he'd stopped breathing. And I hope nobody listening ever has to see that. And I called frantically 911 and the fireman came and resuscitated him, and that was another type of seizure he'd had in which he did stop breathing and we ended up back at the same hospital, and at this point everyone said "Okay, we got it, there was a seizure problem now from that injury." And it was the first time he went on meds.
Sarah: And when you're going through it forward, you don't have any clue where this is leading. In the beginning people try to be helpful, our neurologist is saying I was worried about the effect on IQ and different things with being on phenobarbital because I knew about that, that was an old downer, people even took recreationally and could lower IQs, and he said "Oh I think it's only about five points." And now I feel like it's kind of quaint that I was worrying about that. That was pretty far out of the park.
Janny: So I don't know how detailed you want to get because there was a lot of back and forth, a lot of okay this is probably the worst of it, or these are going to be maybe small seizures for a little while, and you were in and out of the hospital with some pretty terrifying events for a while.
Sarah: Oh for a long while. It just got worse and worse. He would regularly have what they call status seizures, which are the very prolonged Grand mal seizures. He'd be back in the ICU. It could go on for two hours, intravenous Valium, they're giving other drugs until he's totally comatose, and still seizing, and the risk is he'll have a heart attack doing it. It's very hard on the body to go that long. And we kept being given hope, he's just going to have seizures, he'll outgrow them, it shouldn't affect other things, and he went on this roulette wheel of medications, one after another after another. Medications for the side effects of the medications and three drugs a day and just sitting in a stupor in his high chair, yet it made no difference. He continued to have these horrible seizures.
Janny: In the meantime you have a daughter who is 14 months older.
Janny: Who seems to be very wise in her communication with you and Porter through this whole journey.
Sarah: Yeah. She's really an amazing person, and you fast forward to today, and she just finished grad school and talked about "I got my dream job, I'm working with people with intractable mental illness and delays and poverty, I can't imagine a better job." She's, there's a special connection with Porter and she's always had it.
Janny: Yeah. It comes through in the book how close their connection is. So when you were given that information from the doctor that this is a classis pertussis reaction, and he mentioned at some point, was it the same doctor who said-
Janny: -there is a government process to submit a claim, and at first did you think that this was even something you'd proceed with?
Sarah: No I didn't, because I was so full of optimism that each time I'd hear "Oh it's just a one time thing." Oh I guess he has it but we'll get it under control, or he'll outgrow it. I'm a really practical person, I thought I don't want to overreact and go sign up for a program, he's going to outgrow this, this is not a big problem. But even within six months it was brutally clear there was very significant damage and it wouldn't go away.
Janny: Yeah. And so you basically did all of your communication through a lawyer who was familiar with the process and you had to, on top of going through what you were already going through with your sons reaction and seizures and hospital visits, and you in grad school and having another child, having to fight another battle on the other end of submitting evidence, gathering statements, and going to take Porter for test after test after test to submit to the lawyer to submit to I guess the government, right?
Sarah: To the government. And what was probably more painful then even that process with the hypocrisy of the process. So it is stated that it is swift justice, that was the intention of setting up the separate program, that if you had table injury, an injury that was clearly caused by the vaccine, and ours was temporal, it happened the same day, it was classic features, we'd never had anything else. It's meant to be okay, you're one of the casualties we will support his care.
Sarah: So I went into that optimistic, you can see a little theme here, and the lawyer fueled it, she had done these cases for 15 years, and she said to me "You have an open and shut case. This is as clear as it gets, we're just going to get some background information, turn it in, and we should be good to go." And I told people we're going to have this nailed down in a few months. That was eight years before it went nailed down.
Janny: I can't even imagine the eight years, because it wasn't just that you were sitting and waiting. I'd like you, if you would, kind of explain how the goal posts kept getting moved on you.
Sarah: It's really really painful, and if you want to drive anyone into hopelessness, there's a phenomenon in animals and people called learned helplessness. And the way it's generated is by being in an environment where no matter what you do you can't effect the outcome. You have no self efficacy. And I've always had high self efficacy, I have a lot of faith if I work hard things will turn out, but that's exactly what happened. We turned in all of the paperwork required to HHS and the first round was we need more tests. We need to rule out that this wasn't caused by something else.
Sarah: So the months and years of providing tests for genetic testing, metabolic testing, and structural testing, and EEGs and CAT scans, you name it we did it. And turning that all in, then there'd be a delay and another delay, and we'd hear "Wow, sorry the HHS lawyer on the other side moved to a different job, we're going to have to start over." So we'd start over and gather everything up and turn it in again, then months and months and we'd hear "I am sorry your tests are outdated. We need recent testing." And meanwhile you're getting no help in this process whatsoever. Our family is disintegrating before your eyes.
Janny: Right, because he needs full time care-
Sarah: He needs full time care.
Janny: Special care, he just can't be dropped off at your local daycare.
Sarah: No, in fact, there were multiple strands to this story, in the beginning we tried to be as typical as possible, he would go to daycare, he got kicked out of all his daycares. Some for reasons I really understand. He had to have a sleeping monitor when he was little because they thought there was a good chance he would die of a seizure while he was asleep. That doesn't make you really popular at daycares, needless to say. But then he became more and more hyperactive when he was young, which is often an outgrowth of this too. He's cute and bubbly, he's gotten more and more impaired as he's gotten older. But people giving you parenting advice and everything else and he wasn't appropriate for a daycare either.
Janny: But, so you mentioned he was getting more impaired as he gets older. Is it that they're more impaired because they're older and he was still unable to do what was expected of his age group?
Sarah: That is absolutely one piece, he stalled out and didn't move developmentally. And yet, his body grew, he got bigger, he could still do physical things, he could run around and throw legos at people and everything else. But the other piece is that each time you have serious seizures, potentially any of those is going to cause additional brain damage.
Sarah: Because he didn't breathe. One of the neurologists we have now has indicated he thinks he's had a stroke along the way. So it's just one thing after another, not to mention he's on multiple meds and there is no doubt over time it's really affected him cognitively. He was always developmentally delayed but it's gotten far worse over time.
Janny: Because the consistency of the seizures is causing further damage.
Sarah: Yeah. And what happens as an outgrowth of the seizures. He wears his seizure helmet and he's still managed to hit his head badly, sometimes falling forward and he's been hit by a table under the helmet. So you hear watch out for head injuries, if you even have one you might have a problem. Good Lord, the number he's had.
Janny: Right. And he got hit by a car too?
Sarah: Oh that's one of the darkest chapters, and it happened when he was with me. So at that point, Brian, his dad and I had chosen to divorce, we could not do it anymore, and I know that's a very common outcome with parents of kids that have died or become seriously disabled. But there was also just a practical element. We didn't have a nights sleep for probably five years. And we know from psychology, if you want to make someone demonstrate psychosis you sleep deprive them. It was really difficult.
Janny: Yeah I know that you had mentioned trying to manage your family life, but everyone was a casualty.
Sarah: Everyone, and still is in some ways. Again, I think we all are doing really well, we're a close family still, including Brian who's my ex husband, but a wonderful parent and in town and I see him regularly. But we were separated at that point, and I had to go grocery shopping, and I had three kids. This was in Porter's hyperactive phase and we're running out on buckling him in the car, he wiggled out, bolted into the street and got hit. Grace of God he only broke his foot, a car went over his foot. But as we sat there in the middle of the road and the paramedics are coming I thought I cannot manage this anymore. I cannot manage this anymore. And that was a really painful thing as a mother to realize.
Janny: Yeah. So at this point, how old was he then?
Sarah: He was eight.
Janny: And this is before, you were still in the court process?
Sarah: We were right at the tail end at this point.
Janny: And when people say vaccine court, I imagine actual court, but you never stepped foot into a court.
Sarah: We never stepped foot into a courtroom, and it's really a program more than a court. There are, they're called special masters that are meant to become, although they're not all judges, very trained in vaccine science and the ups and downs and the compensation program. And we've been going through this process remotely, because all of the work was getting tests and then retesting and then another expert. We were very fortunate that the clinicians and people working with Porter all supported what we were doing. The neurologist, the neuropsychologist, the specialists at a special school he went to therapists, everybody wrote letters of support. But the government still didn't buy it and continued to fight it.
Janny: Now at this point, I know a lot of my readers, my audience, are aware of how vaccine court, I know that's just kind of like the term that everyone calls it-
Sarah: Yeah, I use it.
Janny: They're aware of kind of the process and that the Department of Justice at least today it is, are there lawyers? So when your case was going through, was the DOJ involved?
Sarah: Oh yes they were. And again, it's set up as this non acrimonious swift justice, it is the most litigious, it's so clear this is a dog fight. There is no assuming good intent. There is no assuming that all of the physicians and specialists who are writing letters, all the testing that's saying this is accurate, what it became clear is they are looking for a loophole to get out of this, and to figure out some way to say we don't need to pay this.
Janny: Right. And maybe my assumption was that everybody knows vaccine court, maybe just because I've talked about it so much, so maybe if I kind of summarize this with the help of I believe Del Bigtree said it best, he let it solidify in my brain how it actually operates, and help me communicate it better to my audience, and you can tell me if this is accurate or not is that in 1986 there was an act passed that took the liability away from the vaccine manufacturers, and so you can't sue them directly, you can't sue the doctors, you can't see internal documents or trials. And the Health and Human Services is in charge, and they oversee the CDC and FDA, NIH, HRSA, and so when you sue for a vaccine injury, because now you have to actually sue the government because the government assumed that liability, their lawyers are the Department of Justice, and generally the Department of Justice would be fighting for you, the consumer, against egregious industries, and this situation is reversed where they would be essentially defending the industry themselves against you the consumer, or just the people with this product.
Janny: There's no disclosure or precedent so you can't use somebody else's case to help you and you have to prove causation. A lot of the science that they would be looking for, the HHS would be responsible for doing, so it's kind of this vicious cycle where you're looking for the evidence from the very health department that you're suing.
Sarah: That is totally right, and I'd even go further, they're defending the industry but they're defending themselves too because CDC has many patents and a great deal of money coming in through vaccines as well. So there's such an enmeshed conflict of interest. It would be like it Boeing was the FAA. We had lots of conversations about agency capture and what happened when everyone got very cozy in terms of regulating thoroughly. But it's worse here. We have the same group that's making money from vaccines, promoting vaccines, and then, the other side of the case in defending them. And apparently, supposedly with our best interest in mind through this program, but it defies logic that could be going on.
Janny: Yeah, and you mentioned Boeing, because they would send in their own to investigate crashes until they were like "Yeah maybe that's not the best idea for you to be investigating your own crashes and determining the outcome of those investigations."
Sarah: It's absolutely right. It can't work and we understand that in other ways, but really struggle with this one. The difference, for instance with the opioid piece, while CDC has culpability too in terms of what doctors were trained on and everything else, they weren't promoting them, they weren't earning money from them. They didn't have patents on them.
Janny: Mm-hmm (affirmative). Yeah. It's really ... you dive down this rabbit hole and you're like how does anybody else not see this? This cycle of protection. So that to me feels hopeless. If I had to go through this court process knowing that, I would feel a little hopeless that my case would be heard in the manner that it should be.
Sarah: Well and I did feel hopeless at times, but I also ... it also sort of got my back up. This was just wrong to be going on. The piece I'll say, even then I thought wow you have two parents with grad degrees, had other educated people who could help us with finding resources and everything else. What about that single mom in the inner city with three vaccine injured kids? What are the odds that she's going to have the time to do this, that she's going to have the connections to do this, the resources. That's where I feel lucky. That's where I feel very lucky that we were able to get through it, and that's part of why I have such a passion around helping people on this issue.
Janny: Because did you hear that a lot of people had started the process and they just dropped out, perhaps because it felt too hopeless or it was taking such a toll on them to get what they needed over and over and over again?
Sarah: Yes I have heard that anecdotally, and people even don't start the process, probably even more obscene is that many people don't know there is a process. Their pediatrician tells them that absolutely it's not true and the case is closed. The CDC and the vaccine especially had agreed to be promoting the vaccine court, that's never happened.
Sarah: So yeah. Very problematic.
Janny: So you hung in there, and you expected to go to trial, right?
Sarah: Yes, in fact we were right up until a few days before our trial.
Janny: So you had a trial date set.
Janny: You were going to be in court with your lawyer, were you expecting to go on the stand to testify?
Sarah: Potentially. She thought that there was a good chance at the last minute they would concede it and pay the case. She thought that because the evidence was so overwhelming, she said more than any case she had done, that he had been vaccine injured and indeed right at the last minute they did.
Janny: So they said we're not going to-
Sarah: No they said "We acknowledge he was brain injured, and we're going to pay the settlement."
Janny: Okay. Did you talk to anybody on that side, or was every communication coming through your lawyer?
Sarah: Every communication through the lawyer. And back to the analogy to air travel and crashes, you would think with someone that all sides are agreeing, my son has been brain damaged by a vaccine, we'd want to do a crash report on that kid, or the other 5,000 kids. I get, and I don't agree with, but I understand if you haven't gone through the process and won they can say "Well we don't agree, they weren't vaccine injured." These are kids everybody's agreed were.
Sarah: And we literally in all the years since the case never heard from anyone, no interest.
Janny: That's baffling to me.
Janny: I know it was at the end of the book where you said nobody showed up. Nobody wanted to understand anything.
Janny: Yeah. I'm just going to read this part, it says "Although the government pays for Porter's care, no one has ever requested that he participate in a study looking at what may be difficult about Porter and the other effected people who won their lawsuits. No one from the government has ever reached out to ask how he's doing. No government researchers ever followed up to study why he reacted as he did to the vaccine."
Sarah: That is true and continues to today.
Janny: That's frightening.
Sarah: It's really ... I just ... it's not understandable, and the only way I can understand it is there's not a desire to decipher this. To even talk to these kids is to give further highlighting to the fact that there is A, there is a compensation program, they've given out three billion, actually I think it's four now.
Janny: Four, I think it's over four.
Sarah: Over four billion dollars. There's a number of our kids who went through, were compensated, have autism, many many. And no desire to highlight any of that.
Janny: And when your case, would they say that you won or they settled with you? How do they classify it?
Sarah: They would probably classify it that they settled.
Janny: Okay. So at the time it was settled, I think you mentioned that at least half, or maybe about half of the cases at that point that had gone through vaccine court were all related specifically to the same vaccine, to the DPT.
Sarah: Yes. There were huge adverse effects connected to it. It really was a seminal piece of even starting the program.
Janny: And it was, I think you said, six moths after Porter's DPT shot that they started to roll out the DTAP more that that's the one that they were going to use, so he kind of missed it by a narrow window.
Sarah: Yes, it was about five months after, they switched.
Janny: Yeah. That is ... and that in and of itself is a silent admission that there was a problem with the other one.
Sarah: Which is kind of how they do it. It's not wanting to acknowledge we're saying there's a problem, we want to score points that we're erring on the side of safety. And the same thing happened with thimerosal although there's still thimerosal in flu shot given to pregnant women and some of the booster shots and aluminum the other things in there.
Janny: Which can effect the growing baby.
Sarah: Oh good Lord, absolutely. Heavy metal is going to have an effect as a neurotoxin. And there's a number of other issues with it, there's never been proper safety studies.
Janny: So I'm curious at this point that you've won the case, for lack of a better term, are you going around telling people we sued the government and they admitted that this was a vaccine injury, do people start to look at you differently and think that you're crazy because even in the face of this lawsuit that they admitted it, that you were maybe looked at a little bit differently because vaccines are so safe and effective?
Sarah: Oh I have gotten a lot of that over the years. I think anybody who say anything, and it's gotten worse. Recently, now, you're absolutely seen as a nutcase if you bring that up. It doesn't stop me at all, and for someone to engage me at all I will say the government acknowledged this, they're paying for his care for like, "Well, but they're perfectly safe." And I'll say "Well then I'm confused why they've paid out four billion dollars and a compensation program continues."
Sarah: There's table injuries, go look on the website. And that's it's further hypocrisy, you cannot have both at the same time. Abolish the compensation program if they're so safe, but the other piece I'd say just having some science training, and all your listeners know this, no drug is unequivocally safe, and certainly not injecting multiple, injecting, and that's relevant to multiple medications into a baby with a very immature immune system. That just is something that is ludicrous if you think about it.
Janny: Yeah. I was going to ask you too if the reaction to his vaccine injury had gotten worse over the years because I'm new in this game. I think a lot of us haven't even looked at vaccines until we were pregnant or had young children that it even crossed our minds that this was a thing. Because back when we were growing up we got a few when we were younger, and the game has totally changed. So even for me over the past five years I've seen this increase of just hostility between the two sides. It's getting worse and worse and worse. And so I just wonder for you, this happened so long ago that it was already settled, but now you're left with a vaccine injured son for life that people are maybe being harsher now.
Sarah: They are being harsher now. I think the CDC and pharma has done an orchestrated marketing blitz to get people really revved up, they have talking points, they have spokes people, there's not money that's gone into advertising the compensation program as they were required to do, but there has been an incredibly big push, and to me anytime we get this dogmatic, I don't care if it's religion, politics, vaccines, it's not just "I have a different opinion." It's "Burn the heretics." And that's really scary to me. That's really scary to me that we need to stamp out people with a difference here.
Janny: Yeah, it's gotten a little nuts especially with all these bills being passed that would remove your ability to even make that choice. You've informed yourself, you've armed yourself with science, truly, and the choice is removed from you if you want public or private school at this point, and that's kind of the battle that we're fighting in California and other states. How you and I initially got involved because of Children's Health Defense, this amazing resource, and Bobby Kennedy going to bat for this cause as well. So at what point did you and Bobby meet and how did you start working for Children's Health Defense?
Sarah: Yeah, so it's a funny personal story. I had become informed and some of the women at Children's Health Defense, Lynn Redwood and Lauren Bono, I got to know virtually way back when and were very interested in the whole topic of thimerosal and mercury, and Bobby was working on environmental mercury and they tried to talk to him, and meanwhile one of my good friends from college married Bobby's brother. And she said to me, and this is back in the 90s, she said to me "You really ought to talk to Bobby." And I said "I don't think he's very open."
Sarah: Well she invited me out to Hyannis Port on a weekend he would be there, and we set up ahead can I just have half an hour of your time to talk through this, and came equipped with all sorts of data, the science, the Simpsonwood conference in which they talked to the ... they added up cumulative mercury in vaccines and were horrified. And I gave him a bankers box full of articles, research, internal memos, things that Lauren, Lynn and others had gotten through freedom of information. And he was very skeptical about getting involved, partly because of the whole political piece, that it's such an awful ... you pay a huge toll getting involved in this. But he went away, and he read every document, and he called me a few weeks later and said "I'm getting involved."
Sarah: And he got involved, I've been connected to him since that time, but he started with World Mercury Project and then moved onto CHD, and I've gone to different functions and just agreed about six months ago that I'm going to work with donors for him at that organization and that was when you and I reached out and connected. And I will tell you after years of feeling pretty hopeless that we're going to get an inroad on this issue, I feel like there's no life breathed into this thing, and part of it is because he's going at it from different angles. We've had this total block that we couldn't do discovery, they found out about Vioxx and opioids by the attorneys getting in there, and we couldn't do that, because pharma is immune from liability. But they found ways around that, and there are cases coming up around fraud and different things where that is going to come out, and the tide is going to turn as people start understanding this.
Sarah: So I'm really excited to be involved in this, I'm really excited to be working with Lauren, Lynn and Bobby, and all the people at the organization. He's hired other lawyers and has multiple cases, just won the Monsanto case of which he was on the legal team.
Janny: Yeah. I think when you and I had initially connected I saw your name, Children's Health Defense, and I'm like I will talk to anyone at Children's Health Defense, I want to tell you, I'm like we need to repeal the 1986 Act, and you're like "Okay girl, we're already there, but let me tell you about this that we're doing." And I'm like okay that works too, let's do that.
Sarah: That works too. Well it's just some new ways of going at it, and the momentum is strong right now, this is the time to get involved and I was so excited and honored to get on board with this group.
Janny: Yeah. I've heard Bobby Kennedy talk about how it was mothers that brought him information, and I didn't realize that that was you, RFK junior is considered a hero in this movement because of his boldness in the face of this topic being so polarizing, especially in the political world of believing the mothers and believing the stories and actually having scientific data to back it up and winning these cases against Monsanto.
Sarah: That's right.
Janny: He is doing amazing work and I'm so thankful for him, but I wouldn't be able to be thankful for him if it wasn't for you and Porter. That's a really ... I don't know if it's bittersweet for you that your child went through this and you are able to be armed with that data and have access to him who could have such a powerful impact in this fight. So I don't know how to thank you for that because I don't think that you would have willingly sacrificed your son for something like this.
Sarah: No, none of us ever would but I really believe the secret in life is when really painful things happen, we must make meaning from them and do meaningful things. It came out of Viktor Frankl's work that he talked about when he was in the concentration camp and a psychiatrist had lost everything including his family, that the only thing people cannot take away is what you're going to do with circumstances, how you're going to react and finding meaningful ways to impact the world out of there. That is healing. I could not have done it with all the other mothers and women who help me with information and supported me. So it's hardly, I happen to be the conduit because I knew his family, but that's it. And I am so thankful to play a role.
Janny: Yeah. And I'm really glad that you're not wasting what happened. You hear people that go through pain, and they don't want to waste their pain, they want to be able to help others or use it to change the narrative or change so that nobody else has to go through it. To expose, in this case, some fraud, and these innocent lives of children. So yeah, I think it's not to go unnoticed and I'm really thankful for you sharing his story, but I know it's not over yet because when you did get the call that the government had settled or you won, then it started phase two. That was sort of like, you had used the analogy of being stuck in rush hour traffic for years and I envisioned you seeing the off ramp and it's empty and then you're told no it's closed, you have to keep going.
Sarah: You have to keep going, and that is because it's wonderful to hear you will be receiving care for your child, but then you start a second process which is how do we figure out what care your child needs, and at the bottom line, once again, the government isn't trusting clinicians that have served my child for at that point eight years, they send in their own person for half an hour to assess what's going to happen and what he'll need in the future. It's demoralizing, it's frustrating, and you'll need to fight through that piece.
Janny: And coming up with proof of how much you spend or spent, eight years ago, and I know that you had to produce receipts, not only produce receipts, but you had to go back to the place where you bought these, or you spent the money, and have a second backing of that transaction, which most of them, I saw you had that interaction where they're like "We don't even keep receipts that far back."
Sarah: No. I mean many places don't. It really is an exercise in stamina, and I believe the goal is to wear you down to your minimal self.
Janny: I admire your strength going through this. I was reading the way that you were responding to things, which to me seemed very patient. I'm like how is she not fuming with that response, you seemed so graceful in how you spoke to people-
Sarah: Not all the time.
Janny: Yeah I can assume you have your moments, but even as I'm hearing you talk, you are consistently more optimistic and you were more hopeful. Anyway, just a lot of these very-
Sarah: Well thanks Janny.
Janny: -I don't know, these interactions that you were having with people, and just the chores that they had you doing over and over and over again.
Sarah: Over and over. And that is the thing, it's just really exhausting. It's a travesty to say there is a compensation program for kids that are injured because we mandate you give this drug to your child, we will take care of them, and then to just brutalize the parents a second time in trying to do what's right for the kid in the governments own program, following the rules. So it's really ... it's just unethical and immoral what's happening.
Janny: Do you think you'd feel at all different if the process had taken half the time and they reached out and said "We had to be thorough to make sure that this was caused by a vaccine, we acknowledge that there are side effects, and we understand that your son was unfortunately took a hit and he sort of took one for the team and we're really sorry and we are going to make sure that you get the care that you need." Would you feel differently if they had taken ownership instead of just "settled" without really admitting.
Sarah: Well without at all admitting, and to answer that I would say yes I would have felt different. I do tend to be a pretty practical, logical person. I really do understand not only that drugs have side effects, good things can have a smaller number of people having bad outcomes. I really understand that, the part that is reprehensible to me is to not treat them, the victims of your system, in a humane, gracious, and accountable way. We know a lot with medical mistakes, out of the University of Michigan and other places that doctors forever wouldn't even talk to the patients or wouldn't acknowledge anything, and they have created teams that do this and a process, the clinicians in the hospital or whatever sit down across from the patient, look them in they eye, and say "We are so sorry. A mistake has been made. We are going to do everything in our power to take care of your loved one if they're living." Lawsuits go down by some number like 70%.
Sarah: So there is absolutely a psychological injury that I would even say is almost the worst part of it.
Janny: Yeah. I think there's that humanity aspect that gets removed in this and they aren't ever publicly acknowledged, it all seems so hush hush and let's not talk about it. So it's really sad, which is why I like to acknowledge this group of people, because I feel like they're dismissed a lot, and we hear you and we believe your story, and you're valid and you're worthy. I would just ask you what would you ... would you have any advice for parents, maybe who are not in the same boat as you, they're not vaccine injured, but they lean towards pro vaccine because they believe that they maybe do more good than bad, and they want to be able to take their kids to well baby visits. What would you say to them?
Sarah: The first thing I would say, and I always say, we do more research before buying a car than we do before injecting our kids with medications.
Sarah: And we just defer, and it's normal, and there's lots of research on authority figures and look at Germany, look at experiments that we've done. Awful things can happen on the name of authority, and we kind of just absolve ourselves of really making our own decision. So the very first thing I'd say, wherever you end up on this issue, is to make that decision in a fully informed way, and you need to be getting your data from more than one source, the people selling and earning money on the vaccines, you need to also really understand are there other points? One of the many things I love about CHD is there's a wealth of information, scientific studies, background information, articles, and you can really start to get up to speed and understand the issue.
Janny: Yeah. I think that's a good point you make about looking outside of who's making money off of this. That was one of the first things I was taught when I'm reading the scientific studies is to look at who the authors work for and who funded that study, because we don't actually know how many studies were done. There could have been 20 studies done and they took the most favorable one and that's the one they published. You can get in depth about what their conclusions were in relation to the actual content, but what about parents who have a vaccine injured child, or maybe they're in the process right now, do you have any words of encouragement for them?
Sarah: The number one thing I'd say is get support, and that is of course emotional support. People who believe you and see you. It's like what we're seeing with #metoo and you're a sexual assault victim. You've got to get yourself surrounded by people who support and believe you. That's the first thing. Second of all reaching out to a group like CHD where you can get connected to lawyers who do these kinds of cases, get up on the current research, what's happening in the court, is a really good second move. If you're in the court, again, figuring out, Facebook through your fellowship, through CHD, through all different organizations, there's many, to reach out and get into a community so you can be getting information, understanding the issue and what's coming.
Sarah: That, I did this in the pre internet days and it was flying solo. I literally didn't even know this had happened to other people, kind of intellectually I knew it because they had a program, but I didn't ever meet other parents until years afterwards. I had no idea. So do that first, that is so helpful.
Janny: Yeah. After you ended up going through phase two, just to kind of close the vaccine court out, you went through phase two and you said that they had a 30 minute observation of Porter and they go back and make their assessment of what does lifetime cost look like for him, so how long did that take? Was there a lot of negotiation there?
Sarah: There was a lot of negotiation, it wasn't eight years, it was much faster in the scheme of things although it seems as it should have happened right away, I think it took about another year. They had what they called a life care planner, not a doctor, not a nurse, who came out, observed him for half an hour and said things like "I think you're underestimating him, that he will go to college." Fast forward to today, let me tell you, he's not going to college, he's 25 and is going to be in a medically supported group home for life, he can't work, he doesn't know how to spell, he can't tie his shoes, he's not toilet trained. So any of us living and in all the supporting letters we got said that was way off base, obviously. So you just keep fighting it, and we got more documentation and the neuropsychologist tests for one of his IQ profiles at the verbal test was in the second profile, like two out of 100, so, and fought through that, and got to today.
Janny: One thing I read, and I looked at one of the documents and I'm not sure if it was general or not, but it looked like there was a max payout as of today, of $200,000 or $250,000 I can't remember, is that inaccurate? Is everybody's claims a different cost because they do an assessment like this or did they change it where max payout is now capped?
Sarah: So max payout when we went through it and I think it may still be the same for pain and suffering for you become brain injured, you're never going to be able to read or drive-
Janny: Make a living.
Sarah: Any of it, with $250,000 and Porter did get the max on it.
Janny: Okay so that's just one piece of it.
Sarah: That's one piece. The bulk of any kind of settlement you get is for living costs. What does it cost to be in a group home for 70 years? That's a good scenario, because many people with the kind of seizures Porter has have a shortened lifespan, I'm very much attuned that that could happen. But no, it's in the millions. It's separate, it doesn't come to the parents, it's held in a trust by a third party and every year, you turn in bills for their care, medical bills and ambulance rides-
Janny: Okay, so they reimburse you separately.
Sarah: Yes. And they projected back in 2001 that it would cost at least eight million dollars for Porter for life.
Janny: Eight million.
Sarah: Yes, and more recent cases, they've talked about when they add up it costs 20 million dollars. So it opens another issue, which is how are we going to pay for all these kids as a society?
Janny: Right. Now a lot of people know that because this liability was moved to the government that the taxpayers essentially are responsible for it. But I think there's actually, every time a vaccine is administered, is there a dollar amount per vaccine that goes into the vaccine compensation plan?
Sarah: Yes. So you pay an extra charge to have your child vaccinated an you get that money paid back for their care if they end up brain damaged.
Janny: Okay. So it's not a-
Sarah: So the government is not paying a penny, it's all of us.
Janny: It's all the people that have vaccinated before. So if you're a mother that doesn't have any children, it's not included in your state or federal taxes?
Sarah: That is correct. It's paid by people receiving vaccines.
Janny: Gotcha, okay. In that calculation, I'm just curious, did they put a life expectancy, did they factor that in, or did they think eight million was going to carry him through 70 years?
Sarah: They actually said 66 years as the longest.
Sarah: Yep, so that was their estimate, with his kind of seizures, and he's had near misses in some of his bad events in the last two years, three years ago he ended up in the resuscitation room because he stopped breathing during a long seizure. So, and then just accidents, he's supervised constantly for good reason, but even with doing that things happen. It's just ... his mattress is a special bed and it's down by the floor because he fell out of bed once and ended up with a head crack.
Janny: Does he sleep with his helmet on?
Sarah: He does sleep with his helmet on.
Janny: I don't want to put you on the spot, but people like me don't know what it costs to have him in a home that is supervising him, so you have an eight million dollar compensation for taking care of him, but what does it cost you to have him taken care of?
Sarah: Yeah, it's a good question, and I could add up each thing, but the home itself, and that's separate from all, he has workers that come in and medical PCs and so on. The home itself is $70,000 a year, and he has constant neurology appointments and hospital visits, and he goes to a special program for his disabilities, he has a medical bus that takes him around. It's pretty remarkable how it adds up.
Janny: Right. So how often do you get to see him?
Sarah: I get to see him a lot. He's over every Wednesday night to hang out with the family, and then I see him on weekends also, and he sleeps over occasionally. It's a lot of work to do that, I don't mean like it's a lot of work, I don't want to take care of my son, I mean just the seizures and everything else, it's not as viable-
Janny: Because he's 25 now, he probably outweighs you.
Sarah: He does, and that's a significant issue, any moms that who have older kids who have issues going on like this, I can't pick him up anymore. He definitely, I weigh 120 pounds, he weighs 150, I'm not picking him up. And after a bad seizure once, we had it recently in public, I just had to sit with him until he woke up, the seizure thank God stopped. That's a serious issue, I can't pick him up if he has a seizure in the living room.
Janny: Yeah. In your book you tell a story about having to carry him, I think he might have been five ish, from the playground, and you had a baby on your hip.
Sarah: I know, it was ...
Janny: My daughter was sick one day, we were actually on an airplane, just me and her, and she had fallen asleep, but you know that deep sleep because she was sick, and I'm like oh I got this, I can carry my roll on luggage, and my bag, and my purse, and my five year old. We were like two steps down the plane and I'm like oh I don't got this.
Janny: I just can't even imagine you, and then you had forgotten your keys at the playground-
Sarah: Right. And that's a time you normally just say I think I'll just abandon them, but that was our ride home.
Janny: Yeah exactly, right? So I think yeah, these are the day to day things that were happening to you that are outside the scope of just having a rough day, these are really hard days.
Sarah: They're really, really hard. That's right.
Janny: So in terms of support, gosh, I'm just amazed that you are on the other end, well not really on the other end, but you're here like using this and using your voice and telling the story, and I'm thankful for you and that you are still willing to tell the story, I'm sure you've told it many times.
Sarah: Oh it's my honor to get to talk with all of your listeners, it really is. And just to lend support to anybody else going through this, whether trying to make a decision and being really pressured or whether you dealt with this as an outcome, I just send so much support and love out.
Janny: Yeah, same, I echo that. Again, thank you Sarah for being here and sharing all that and I don't know, just bringing some positivity into this topic.
Sarah: You are so welcome. I really appreciate getting to talk to everyone. I'd love to hear any comments people have or questions, if people post that I will be really interested to see them.
Janny: Yeah. Definitely. All right, well we'll wrap this up. Thanks again for joining, and we'll chat in a moment.
Sarah: Thank you.