Last Tuesday, April 26, was a red-letter day for the TMR community. Many health “revolutionaries,” myself included, were thrilled to be able to attend a United Nations conference where Dr. Martha Herbert, Kevin Barry (filling in for Robert F. Kennedy, Jr. who was absent due to a family emergency), and Dr. Leonardo Trasande spoke about the deleterious effects of numerous environmental intoxicants, including those that are injected, on developing brains, and NYU Professor of Law Mary Holland spoke about the human rights implications of compulsory vaccine programs and the need for truly informed consent.
At the same time that we were enjoying this historic step toward international recognition of the rights to bodily integrity and to make one’s own healthcare decisions, a heavy blow to those principles was struck in the province of Alberta, Canada. If you’ve been with TMR for a while, you may be aware that we have been following with interest the trial of David and Collett Stephan, the parents of Ezekiel Stephan, a 19-month-old boy who died of a mysterious illness back in March of 2012. David and Collett were charged with “failure to provide the necessaries of life” for Ezekiel, a charge approximately equivalent to manslaughter in the United States. The trial had been going on for seven weeks, and the previous week Alberta’s former Chief Medical Examiner, Dr. Anny Sauvageau, rocked the proceedings by providing dramatic testimony refuting all the important claims of her previous employee, Dr. Bamidele Adeagbo, the medical examiner who had performed Ezekiel’s autopsy. So it was more than a shock to receive the news Tuesday evening that the Stephans had been convicted.
This verdict hit all of us at TMR very hard, not least because many of us met David Stephan last year at the AutismOne Conference, and all of us were immediately impressed by his humble humanity. In fact, if I were to imagine the ideal father for a child, chances are good he would look and sound a lot like David Stephan: accessible, involved, loving, and wise. Since that time, we have seen pictures of him with his family, his wife, Collett, and their three other sons, and the impression has merely deepened.
The guilty verdict probably hit me the hardest of all of us, though, because I too had a child who died of a mysterious illness, and all I could think was how easily that could have been me if the medical examiner in my son’s case hadn’t decided that there was nothing that we or the hospital could have done that would have saved my son’s life. While that was a relief to hear at the time – I had spent the previous twelve weeks thinking up elaborate scenarios where my son would still be alive “if only I had . . . ,” – there remained a cynical doubt in the back of my mind whether or not it was really true or whether the need to exonerate the hospital played any role in that conclusion. In any event, it did help me to drop the guilt of the “woulda, shoulda, couldas” to a large extent, and begin the painful process of healing. You see, whenever a child dies, loving parents will find themselves wracking their brains for something they could have done differently that might possibly have saved their child and then berating themselves for not making those choices in the first place. Through various support groups, I’ve met many parents of children who have died, and I’ve found that nearly all of them go through this exercise – repeatedly. After all, it is our job to keep our children safe, and there is nothing worse than failing at that job.
Unfortunately, we are not given instructions up front about the best way to go about that for our particular children, however, and we have to make thousands of decisions on the fly as to how best to proceed. There is no possibility that every decision we make will be the “right” one; we just have to do the best we can, based upon the information we have at hand, and hope that we get lucky and are “right” when it matters most. I have had the heartbreaking experience of listening to a grieving mother berate herself for choosing to co-sleep with her child on the very same day as another grieving mother berated herself for putting her child to sleep in a crib. Each mother was convinced that, had she made the opposite choice, her child would still be alive. But as a witness, listening to their sobs, it was glaringly obvious that neither choice guaranteed a living child. And that is a very hard lesson for any of us to learn: When it comes to life, there are no guarantees. Period.
Possibly the most excruciating example of “no guarantees” I’ve ever encountered was the father who was also a paramedic who had been unable to save his own child. This father was crushed by guilt; if anyone should be able to “guarantee” their infant’s survival, it would be an emergency medical technician, right? That’s what they do, all day, every day. And yet . . . There are no guarantees. Period.
If given the option, any of us would have gone back to a time before our child’s death in a heartbeat and made different choices in an effort to forestall it. And it’s possible that, for some of us, those choices would have changed the outcome, but as was made crystal clear by my son’s autopsy report, making different choices cannot provide the guarantee we seek. Despite the cliché of 20/20 hindsight, we can’t truly know what would have happened if we had done things differently. I feel for the parents who are told that a different choice could have made a difference as, unlike most of us whose mistakes do not have such dire consequences, their mistake ended in the worst possible outcome. That can be a tremendously heavy burden to bear for parents who were only doing what all of us parents do every day, making the best choices they could with the available information.
In David and Collett Stephans’ case, their son Ezekiel had been sick with a mild croup on and off for over a week. At one point, he was so much better that he was able to go out with his family, but in hindsight that may have been a little too much too soon, as he subsequently relapsed. He was seen by a nurse and family friend who suggested the possibility of meningitis, but told the parents if he were taken to an emergency room he would likely be discharged as the symptoms were consistent with a mild flu. As Ezekiel didn’t have a fever, stiff neck, or other common symptoms of bacterial meningitis, the life-threatening form didn’t seem likely as viral pathogens cause approximately 95% of all meningitis. In addition, bacterial meningitis generally escalates quickly, often giving its victims less than 24 hours to seek medical help.
But on March 13, Ezekiel took a turn for the worse. His breathing became obstructed as sometimes happens in croup, and David did CPR while Collett called 911. Ezekiel coughed up some mucus and started breathing again, but David and Collett decided they would take him to the nearest hospital themselves rather than wait for an ambulance (this is verified by the recording of the 911 call where Ezekiel’s breathing could be heard). He stopped breathing in the car again, and this time Collett did CPR until an ambulance met them about halfway to the hospital. Unfortunately, the ambulance was not properly equipped to intubate a child, which left Ezekiel without oxygen for seven or eight minutes while paramedics tried to establish an airway. As a paramedic testified at trial, they had been requesting the appropriate equipment for about a year with no response. Tragically, the equipment wasn’t restocked until the week after Ezekiel’s death. Ezekiel was admitted to Alberta Children’s Hospital in Calgary where he was declared brain dead three days later on March 16 and was removed from life support on March 18. The cause of death was not apparent, and an autopsy was performed on March 19.
The official autopsy report on Ezekiel’s death became the basis for the criminal proceeding against the Stephans. The autopsy’s conclusion was that it was the opinion of the medical examiner that Ezekiel had died due to a bacterial meningitis infection and a lung empyema, both presumably caused by haemophilus influenzae bacteria. The medical examiner had noted that Ezekiel had not received the Hib (haemophilus influenzae type B) vaccine as well. The autopsy report could be, and was, taken to mean that Ezekiel’s parents were at fault for not getting him vaccinated in the first place and not seeking medical attention soon enough.
Four years later, the Crown is pointing a finger at the Stephans and saying, rather loudly, “It’s YOUR fault your child died, and we are going to punish you for it!” despite the fact that the Stephan family has already lived with the ultimate punishment for any mistakes they may have made for the last four years: life without their beloved son and brother Ezekiel. Like me, you may have trouble understanding exactly how sending loving parents of three living boys to prison for up to five years can possibly be a wise or just decision, but how much worse would it all be if the Crown were wrong about Ezekiel’s death? And worse still if they were being wrong deliberately in order to deflect blame and pursue a government agenda?
It was clear from the autopsy that Ezekiel had meningitis, but what was not clear was the “infectious agent” that caused the meningitis. The infectious agent is extremely important in determining cause of death because, while death from bacterial meningitis is fairly common, death is very rare in viral meningitis cases. If Ezekiel’s meningitis was due to a virus, then it was unlikely to be a causal factor in his death. Dr. Adeagbo claimed that the meningitis was bacterial in origin, and that he had found evidence of haemophilus influenzae bacteria, which does indeed cause meningitis. But a swab done when Ezekiel arrived at the hospital tested positive for enterovirus or rhinovirus, both of which can cause croup, and enterovirus is also the leading cause of viral meningitis. The presence of enterovirus can easily explain both the low-grade croup illness that Ezekiel had been experiencing and the later development to meningitis.
So why, then, did the medical examiner say it was his opinion that bacterial meningitis had killed Ezekiel? Dr. Adeagbo gave a few reasons for his opinion at trial: no evidence of croup; predominance of neutrophils, a particular type of immune cell more associated with bacterial than viral meningitis; and the presence of some Gram-negative bacilli in the empyema.
It was, of course, crucial for the defense to do their own analysis of the autopsy evidence. They hired Dr. Anny Sauvageau, the former Chief Medical Examiner for Alberta, who testified at trial that she had been fired from her position as CME after refusing to make politically motivated alterations to death certificates. She chose to expose the corruption rather than keep it a secret, saying at the Stephans’ trial, “My soul is not for sale.” Under the circumstances, Dr. Sauvageau might be expected to bear a grudge against the Crown for her dismissal, but if she did, she doesn’t seem to have allowed it to cloud her thinking. In order to prepare her report, she refused to hear what the Stephans had to say in case it would color her judgment of the evidence. Instead, she listened to the 911 calls, went over Ezekiel’s medical file and the autopsy report in detail, including pictures, slides, and CT scan, and read the 193 pages of Dr. Adeagbo’s testimony and the five-page report from Emergency Services.
What did the former Chief Medical Examiner who was fired for being too ethical conclude when she went over all the evidence? Surprisingly, she came to an entirely different conclusion than that of Dr. Adeagbo, and in her report, which was later used as the basis of her courtroom testimony, she systematically destroys every foundation for Adeagbo’s opinion. One would not expect to see independent evidence of viral croup at autopsy, she attests, because autopsy findings for croup are indistinguishable from findings associated with mechanical ventilation with intubation, which was clearly the case for Ezekiel from March 13 to March 18. In addition, the breathing pattern exhibited by Ezekiel Stephan that could be heard on the original 911 call was consistent with obstructed breathing due to croup.
The report makes it explicitly clear that predominance of neutrophils does not rule out viral meningitis, particularly when caused by enteroviruses (she cites four different scientific sources for this information). In addition, Dr. Sauvageau’s analysis of the autopsy slides indicated no evidence of a predominance of neutrophils in the first place!
Adeagbo’s third argument was that Gram-negative bacilli had been found that were identified as haemophilus influenzae when analyzed by an experimental technique. Dr. Sauvageau asserts that a positive identification cannot be made for trial purposes with an experimental technique and also suggests that Dr. Adeagbo may have been confusing types of bacteria at the outset. Adeagbo was quite definitive about the finding of “Gram-negative bacilli,” which means a rod shaped bacteria, when haemophilus influenzae is in fact a Gram-negative coccobacillus, somewhere between a rod-shaped and spherical bacteria. Dr. Sauvageau says that the finding of a few Gram-negative bacilli could easily be explained by a phenomenon frequently seen at autopsy known as bacterial translocation, where bacteria from other parts of the body migrate after death or even while on life support. A lumbar puncture, a somewhat risky procedure which could have positively identified the infectious agent, was understandably not performed while Ezekiel was alive, and no bacterial growth was seen in the cerebrospinal fluid after autopsy.
In short, Dr. Sauvageau says, there was no reliable evidence on which to base a conclusion as to the infectious agent. In the absence of such evidence, the most likely agent would be enterovirus as it causes the majority of meningitis cases and Ezekiel tested positive for it on admittance to the hospital. It can also easily explain all of the clinical findings.
Possibly the most damning piece of testimony from Dr. Adeagbo referred to the lung empyema. According to Dr. Adeagbo this empyema was in the later of two stages, implying that Ezekiel had been sick with bacterial pneumonia (like with meningitis, it is the more dangerous kind) and struggling to breathe for some time before the Stephans brought him to the hospital. It would be understandable for people to feel vindictive about parents who see their child struggling to breathe with pneumonia and don’t seek medical attention pronto, but is that really what happened? Not according to Dr. Sauvageau. First, even if Ezekiel had an empyema in one lung, two weeks was not likely to be anywhere near long enough for the empyema to cause death. Secondly, Ezekiel’s empyema was in the second of three stages and not as advanced as Dr. Adeagbo testified, and was most probably caused by the intubation process as aspiration pneumonia is common under those circumstances. Thirdly, if Dr. Adeagbo really believed that the empyema was a causal factor in Ezekiel’s death, it was odd that he did not sample the empyema in order to determine an infectious agent as the antibiotics that Ezekiel received would not have been likely to kill bacteria there. And, lastly but most importantly, an initial chest x-ray taken shortly after Ezekiel’s arrival at the hospital made it clear there was no empyema at that time. This x-ray, however, was not in the medical file given to the defense in the discovery process. Why would an x-ray that obliterates the most damning evidence presented by the Crown not be included in the discovery material unless the Crown were deliberately attempting to misrepresent the facts? And if they were deliberately misrepresenting facts, why would they do so?
One clue may be the cause of death according to Dr. Sauvageau: medical misadventure. According to Dr. Sauvageau, Ezekiel had the croup and meningitis, probably due to enterovirus. While they can cause breathing obstruction, they are very rarely fatal, and the likelihood is that with proper intubation Ezekiel would have survived. The lack of appropriate equipment on board the ambulance meant that Ezekiel’s lungs, and more importantly his brain cells, were deprived of oxygen for an extra eight minutes. This lack of oxygen according to Dr. Sauvageau was the reason Ezekiel died. Oddly, Dr. Adeagbo left out any discussion of anoxia (lack of oxygen) in the autopsy report and argued at trial against anoxic damage because he didn’t see the characteristic pink color associated with that type of injury. According to Dr. Sauvageau, though, that color is a short-term phenomenon, on the order of hours (references cited), and would not have been expected to be present five days after the initial injury. Wouldn’t one expect the medical examiner performing the autopsy to know that? Is it possible, therefore, that the Crown’s case against the Stephans is more about covering up their own culpability for not providing the proper equipment for handling respiratory arrest in a child than it is about any real negligence on the part of the parents? The apparent misrepresentation of autopsy evidence and the absence of an exonerating chest x-ray in discovery material would make that scenario seem likely.
Of course, there may be another agenda at work as well. The Stephans are well known for being “crunchy,” meaning they tend to prefer, when reasonable, alternative methods of healthcare to more mainstream ones. In fact, Health Canada had previously sued David’s father, Anthony Stephan, who owns a supplement company, over claims made about the use of one of his supplements in treating bipolar disorder. However, in 2006 the judge ruled in favor of Mr. Stephan when it became apparent at trial that his supplement, EMPowerPlus, was effective for the many patients who relied upon it to keep them well.
Like many of us here at TMR, the Stephans don’t vaccinate. As Canadian citizens, that is completely within their rights; due to a clause in the Canadian Constitution, vaccines cannot be mandated. This is a frustrating situation for Health Canada, which has made no bones about their desire to increase vaccine uptake rates. How do you do that if you can’t make them compulsory? Answer: Scare people into doing it. If talk of “deadly diseases” won’t do it, then scare them with the prospect of legal action against people who don’t vaccinate. It seemed that this was exactly what the Crown intended with their prosecution of the Stephans. The fact that the Stephans had not vaccinated Ezekiel with the Hib vaccine was mentioned in the autopsy report and, despite a lack of evidence, Dr. Adeagbo argued that it was haemophilus influenzae that killed Ezekiel. The Crown ended up dropping this line of prosecution at trial, possibly because it didn’t want the testimony of immunologist Tetyana Obukhanych on the record. If I were the Crown, I wouldn’t want her testimony on the record.
Given the control the government has over the healthcare system in Canada, the Stephans may be considered political dissidents for seeking less invasive, less dangerous, and more efficacious alternatives to the standard mainstream system of pharmaceutical-based care. This plus Anthony Stephan’s winning court case may have made the Stephans an attractive target for the Crown – the idea being that the Crown wanted a precedent that allowed them to crack down on outliers. This might all seem a bit unlikely, if not paranoid, if it weren’t for two things: A prosecution of this type had never been done before in Canada; the Stephans’ attorney could find no case law to refer to. And since the Stephans’ case was filed, at least two other similar cases have been filed in Alberta.
On Tuesday, April 26, the Stephans were found guilty by a jury of twelve people, many of whom seemed conflicted as six of whom were said to be crying as the verdict was read. The next step is sentencing, which is scheduled to take place in June. The sentencing is in the hands of the judge who presided over the trial and could range from probation to a maximum of five years in prison for both David and Collett.
For people who believe that individual freedom to make lifestyle choices, including healthcare, is an important value, the Stephan case has to be an affront. It is predicated upon the idea that there is only one valid approach to healthcare, that which is sponsored by the government. The underlying assumption is that not doing exactly what Health Canada considers appropriate makes one a negligent parent. It may not be obvious how absurd this position is until you consider that “medical misadventure” is not at all unusual. In fact, it is so common now in the United States that medical mistakes in hospitals may be harming up to nine million people a year and killing up to 440,000 of them, making them the third leading cause of death. In addition, pharmaceutical drugs killed 29,471 people in 2013, far more than the 17,000 that were killed by illicit drug use. A 2015 study at Massachusetts General Hospital, generally considered a leader in patient safety, found that medication errors occurred in nearly half of all surgical procedures. In 2009, more than half of the nearly 4.6 million drug-related visits to U.S. emergency rooms nationwide were due to adverse reactions to prescription drugs, most of which were taken as prescribed. At a medical conference, a Harvard professor “looked out at a room of 2,000 doctors and asked ‘How many of you know of another doctor who should not be practicing because he is too dangerous?’ Every hand went up.”
My niece once took her two-month-old daughter to the hospital with a fever. The hospital gave her the wrong antibiotic, causing cardiac arrest. Medical personnel denied there was anything wrong until my niece pointed out that her daughter was turning blue. Her daughter was nearly killed and was without oxygen for about seven minutes as a result of the hospital’s error. Hospital staff used what was at that time a new technique, medically induced hypothermia with a slow return to normal temperature, to minimize the damage and maximize her chances of survival, but she still suffered significant brain damage, has cerebral palsy, and lives her life in a wheelchair, all because of hospital errors. It would be one thing if this kind of situation were unusual, but it seems that the only thing about it was that the evidence of error was not effectively covered up. There are many more stories of very sick children brought to emergency rooms who were either not treated for what was wrong with them or were treated for something that wasn’t. Medical kidnapping cases like Justina Pelletier have become more and more common as parents increasingly find themselves at odds with a medical establishment that doesn’t recognize the complexities of today’s chronic childhood illnesses. Many children with autism end up in hospitals at some point with excruciating gastrointestinal pain (just like the children in the infamous 1998 Wakefield et al Lancet paper), only to be treated with inappropriate cocktails of antipsychotic drugs. Yes, emergency room personnel often do amazing work saving people’s lives, but it is pretty clear that the odds are good when seeking mainstream medical attention that mistakes will be made that have potentially devastating consequences.
Given the above facts, is it any wonder that many parents are not eager to turn their children over to doctors and institutions that are so likely to make grievous errors in their care? Isn’t the assumption behind the Stephan prosecution, that children are better off getting mainstream medical care as soon as possible, just that: an assumption? And isn’t that assumption based more on faith in the omnipotence of medical institutions than on the available evidence, making it more of a religious belief than a fact? In actuality, wouldn’t a rational response to these facts be an attempt to minimize mainstream medical care when possible in order to “first, do no harm”? Assuming for a moment that Ezekiel would still be alive if his parents had made different medical choices, which is by no means a foregone conclusion, why are conscientious parents who make mistakes which result in a child’s death prosecuted as criminals when medical professionals whose actions kill children are only prosecuted if there is evidence they did it deliberately? If medical professionals are (frequently) given the leeway to make fatal errors without going to prison, why are parents held to a much higher standard? And if we are prosecuting parents for making “wrong” decisions, why do we not prosecute parents who take their children to medical professionals who then kill them? Clearly, either way a mistake was made that led to a child’s death. Apparently only one type of error is considered actionable – the error committed by the medical heretic.
From my perspective, it’s exceptionally difficult to see how separating David and Collett Stephan from their three surviving sons and sending them to prison serves any beneficial purpose whatsoever. It won’t bring back Ezekiel, and knowing the kinds of messages I received from my son after his passing, I suspect Ezekiel would be the last person to want his parents to go to prison – especially given the likelihood of further trauma for the brothers who have already been through so much. But I recognize that I’m biased. You see, I too had another child who needed me. A child whose world was rocked to the core when her baby brother died. I can’t claim that I was the best parent in the world, or even on my street, at that time. Most parents of children who have died experience a tremendous loss of confidence and are over-protective of surviving children, and I was certainly no exception. But no parent ever tried harder to provide their child with a happy, stable home life than I did, and it chills me to the bone to consider what her life would have been like if her father and I had been sent to prison.
Much as I hate thinking about the effect on the Stephan boys’ lives if their parents are indeed sent to prison, it may be only the tip of the iceberg when it comes to consequences of this prosecution. The precedent being set – the idea that it’s okay to go after good parents whose medical decisions are based on anything other than blind faith in the god of medicine – can only be harmful to any society that believes itself to be “free.”
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