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Reports of a disturbing chain of events that ended in the likely preventable death of a 19-month-old Canadian child have made the rounds this week. The case was discussed by friend of Science-Based Medicine Orac (who I believe is some kind of a protocol droid) on Respectful Insolence two days ago. But even if you’ve read that excellent post, please continue reading as I have updated information and, I believe, additional insight into this unfortunate outcome.

If this is your first encounter with the story, prepare to be angry and frustrated but don’t presume to know everything that happened. The numerous news reports, beginning back in 2013 when the parents were first charged and the case went public, are not all well-written and there are discrepancies between accounts. Add to that the announcements and fundraising efforts by the family on Facebook and various other crowdfunding websites, and their alleged side of the story as reported by disreputable sources steeped in pro-woo/anti-vaccine bias, and we have one confusing mess of facts and a heap of conspiracy claims to boot. The only aspect of this case that is completely irrefutable is that a child suffered and died, and that he was failed by people who should have known better.

The making of a tragedy

On March 18th, 2012, physicians at Alberta Children’s Hospital made the always-difficult decision to remove 19-month-old Ezekiel Stephan from life support after five days under their care. Carrying the diagnosis of brain death, there was sadly no life to support at that point. The events that led to his tragic death are currently the focus of a trial where Ezekiel’s parents stand charged with “failing to provide the necessaries of life.” I’m no lawyer, but it appears that if convicted they would face up to five years in prison, a length of time that would be unlikely to placate most folk’s demands for justice. They also stand to lose custody of their remaining children.

On February 13, 2013, Canadian news outlets first began reporting on the death and the fact that Ezekiel’s parents were being charged after a year-long investigation. The trial finally began this week and has been covered by a variety of news sources ranging in quality, with some showing clear signs of bias (Health Impact News). I have tried my best to piece together what happened. Take it all with a grain of salt considering the frailties of human memory as it passes through time and the filters of our personal biases, but some of this information was culled from taped interviews given at the time of Ezekiel’s hospitalization four years ago.

Here goes.

In late February of 2012, Ezekiel’s parents noticed that he wasn’t feeling well. He wasn’t objectively febrile or extremely ill-appearing, at least not yet. He just wasn’t as active as usual and he had a runny nose. Although not explicitly stated, he must have had some degree of cough because his family at first thought that he had croup, a common viral illness in toddlers that targets the upper airway and results in a characteristic “barking” cough. Most kids with croup don’t need medical care. So far so good.

Ezekiel’s parents, proponents of “natural” therapies and wary of conventional medicine, treated him with a variety of herbs and other home remedies. Horseradish for example. Over the next several days his condition worsened, with Ezekiel becoming “achy” and more tired, so the family contacted Lethbridge Naturopathic Medical Clinic (website is down so I can’t review it) to ask for something to help “boost Ezekiel’s immune system.”

Rather than a Naturopathic practitioner at the clinic, the family spoke to a woman “who fills holistic prescriptions.” She has now testified that they specifically mentioned the possibility that Ezekiel might have viral meningitis. According to the family, they researched meningitis online and did not think that he had symptoms consistent with a bacterial infection, a clinical distinction that can be challenging even for a seasoned clinician. In a toddler, we generally would need a sample of cerebrospinal fluid to make that call.

When asked if Ezekiel had been evaluated by a medical professional, his family claimed that a nurse had come to their home. The nurse, or midwife depending on which news report you read (many are both), was actually a friend of the family that had come at their request and she has also now testified in the trial. She stated under oath that while she did not believe that Ezekiel was seriously ill, she did mention the possibility of meningitis and that he should be seen by a medical doctor.

Two or three days later, Ezekiel was brought into the same naturopathic clinic where Dr. Tracey Tannis recommended a “tincture of echinacea.” According to a taped March 15th, 2012 interview of his father, Ezekiel was so stiff that they were unable to put him into his car seat, so they laid him flat on a mattress in the back of their vehicle for the ride to the clinic. According to more than one report, Dr. Tannis did not examine Ezekiel.

Later that evening, despite initially believing that Ezekiel was responding to the new remedy, he was found to be unconscious and not breathing. The family notified emergency medical services, initiated CPR, and drove to meet the ambulance in an attempt to save time. Ezekiel was transported to a nearby hospital in Lethridge and airlifted to Alberta Children’s where he ultimately was found to be dead. According to the family, the hospital allowed a few days for them to try both oral and IV “natural remedies” to no avail. Of course his physicians are unable to discuss protected medical information publicly so who knows what really happened in the hospital.

What killed Ezekiel Stephan?

As reported by the media as well as in the alleged family account linked to at the onset of the post, the autopsy on Ezekiel revealed meningitis, which is typically an infection related inflammation of the covering of the brain and spinal cord. I can’t find confirmation of the organism but it is exceedingly likely that it was bacterial rather than viral given the severity of his presentation. Not that viral meningitis can’t be deadly, it just usually isn’t in an otherwise-healthy older child.

The fact that Ezekiel, like his older sibling, was not vaccinated, further increases the likelihood that he died from bacterial meningitis. The most common cause of bacterial meningitis in a toddler, Streptococcus pneumoniae, as well as the bug that used to be, Haemophilus influenzae type b, are both exceedingly deadly if not treated in a timely fashion. They can cause severe neurologic injury and death even when they are.

Both infections can be prevented with a safe and effective vaccine. I’ve diagnosed zero cases of HiB meningitis and only one case of pneumococcal meningitis in 13 years of practice. Prior to these vaccines, pediatricians that far out of medical school would have seen hundreds of cases considering that 1 out of every 200 children used to suffer invasive Hib disease alone.

Not that the ultimate cause matters in this case, because a critically ill child is a critically ill child. The question jurors are being asked to answer is not whether or not Ezekiel’s parents knew what was wrong but if they failed to respond appropriately to his severe illness. Should two medically naïve parents have recognized that their child needed emergent evaluation by a trained medical professional? Did they simply make a fatal mistake or were they biased by their world view? The parents have pleaded not guilty.

Who is to blame for Ezekiel’s death?

The parents may be the focus of the trial, but are they the only parties potentially at fault for their son’s death? What about the nurse who came to the house at the parents’ request to take a look at Ezekiel? In general, I consider it to be risky, even acting as a “friend of the family not there to give a diagnosis,” to provide medical advice outside of a professional capacity at work. This is not to say that I haven’t done it in certain situations, but the more ill the child, the less of a good idea it probably is. In addition to the possibility of impaired judgement, there are also numerous cases where physicians have been sued for malpractice by friends and family members after giving requested medical advice.

I do not know if the same potential legal issues would apply in a case where the advice was given by a nurse rather than a medical doctor. But in her defense, it does appear that she recommended that the family seek appropriate medical care. If she suspected medical neglect, one could argue that she is a mandated reporter as she was potentially acting in a professional capacity. That would be an interesting case in itself. But she testified that the child did not seem that sick at the time, which could be true. It is also possible that she didn’t do that thorough of an assessment, or any assessment for that matter. You can’t tell asleep from obtunded visually or with a stethoscope.

What about the Naturopathic provider? Here it is considerably clearer. I can see only one of two possible explanations for this aspect of the case, unless you consider that maybe they left Ezekiel in the car. Actually I wouldn’t discount that if he was as uncomfortable as stated in his father’s interview three days before he died. So three possible explanations.

One possibility is that this particular practitioner is so incompetent that even when primed by the parental concern of possible viral meningitis she did not recognize a toxic child on visual assessment or during her examination. A child, I remind you, that was in such pain from infection of his meninges as to be unable to tolerate any stretching of his neck or back, and who was laying right in front of her while she prattled on about tinctures, or balms, or whatever nonsense she conveniently sells from her clinic dispensary. Either that or, as has been reported, she discussed Ezekiel’s case with the family without so much as laying a hand or stethoscope on him.

It seems very likely that an opportunity to save Ezekiel’s life was missed when he was brought to the naturopathic clinic. So far, it appears that the clinic and Dr. Tannis should face disciplinary action at the very least. They are a danger to their community and whatever worthless license the government has seen fit to bestow upon them should be burned to ashes and the ashes divided up and buried in separate locations in order to avoid any chance of it reconstituting.

It’s interesting that the “Health Nut News” article I linked to at the beginning of the post, which supposedly described the events as related by the family, did not include any mention of a call or visit to a naturopath. Maybe they forgot, although that is unlikely. Or perhaps they realize that it may be taken as evidence that they knew exactly how sick poor Ezekiel was. This alleged family account also describes how Ezekiel had improved dramatically and was in fact well enough for his worried mother to leave his side to attend church, only to suddenly and unexpectedly stop breathing. This is inconsistent with a diagnosis of meningitis resulting in complete cardiopulmonary arrest only a few hours later.

Ultimately, in regards to Ezekiel’s parents, I think application of a reasonable parent standard is probably appropriate. At what point would a reasonable parent seek out medical evaluation for their ill toddler, particularly when already concerned about the possibility of meningitis? It is perhaps a difficult assessment in this particular case, because there is so much we just don’t know, but not impossible.

Did the nurse friend really assess him at the house and find him not that ill-appearing, or did she just look at him lying there asleep/altered and think, “What are the odds he is really sick?” Did he truly improve prior to crashing suddenly like that, or was that just denial and wishful thinking? Was he really afebrile this entire time or were they just not taking his temperature? Was Ezekiel able to drink and maintain hydration? At what point did he truly become stuporous or comatose? It’s frustrating to not have more details.

In my mind, I keep coming back to the father’s taped statement on March 15, 2012. Ezekiel was so stiff they could not even sit him in a car seat. They had to place him on a mattress in the back of the car for transport to the naturopathic clinic. They already suspected possible meningitis. If that doesn’t meet the reasonable parent standard for accessing emergency medical care, what the hell does?

They did seek assistance, however. They accessed what in their biased world view counted as medical care but was in reality a hopelessly inadequate medical cargo cult, the world of naturopathy. But in my opinion a reasonable parent would have called 911 at that point or at the very least immediately driven him to the nearest emergency department.

It is possible, but unlikely, that the events on the day of his arrest went down as allegedly described by the parents in the Health Nut article. But he probably suffered for days without even Tylenol or ibuprofen for his severe head and neck pain, gradually slipping into an unconsciousness from which he would never recover. His parents, like so many before them, probably did what they thought was best in their warped reality, and kept hoping that he would eventually turn the corner.

From the minute it became clear that they had waited too long to seek real help, they probably began doing what all humans do, rationalizing and unintentionally altering their memory via the process of repeated recollection. Their memories being sent over and over again through a filter that slowly removes aspects that call into question their parenting skills or love for their child. Memories that might cast doubt on their ability to protect their child from harm were eventually replaced by conspiratorial outrage.

Conspiracy!

From the very beginning of this saga there have been claims of conspiracy from the family. In the initial news reports, Ezekiel’s grandfather questioned the charges, raising the ridiculous concern that they had something to do with his company, which goes by Truehope. Truehope’s main product is a supplement called EMPowerplus, which they claim is effective in the treatment of a variety of mental health conditions, such as depression and bipolar disorder, but also fatigue and autism.

Here’s the supposed connection between the charges against Ezekiel’s parents and Truehope. The Canadian government tried, and failed, to shut the company down for making bogus health claims over a decade ago and they haven’t forgotten about it. Big pharma is also upset about losing profits to his family’s miraculous supplement, so much so that they have managed to interfere with their online fundraising accounts as punishment. The father compares himself to Gandhi, accuses the Canadian Broadcasting Company of being out to get them, and claims that thousands of people committed suicide when EMPowerplus was temporarily confiscated by wicked Mounties. It’s all here and here. But wait, it gets worse.

As I mentioned above, Ezekiel’s parents did not vaccinate their children. Some known anti-vaccine pseudo-journalism entities, namely Health Impact News, have taken this fact and come up with the absurd conclusion that the Canadian government is making an example of the Stephan family. Because they are limited in their ability to force parents to vaccinate their children, they are attempting to scare people into doing it by threat of prosecution.

Essentially, they claim, parents of unvaccinated children will be held to a higher standard in regards to accessing medical care because they will face criminal charges if their child has a bad health outcome. The implication is that the government will see to it that these children are diagnosed with a vaccine preventable disease so that the “failing to provide the necessaries of life” charge will stick. The Stephan family has endorsed this concern on Facebook, writing that their family is being “offered up on the sacrificial alter of the vaccine industry.”

Conclusion: Distractions from a tragic and avoidable death

Ultimately we will probably never know exactly what happened in the home of Ezekiel Stephan. As I hope I’ve made abundantly clear, my take on the situation is a medically informed speculation. I believe, based on the available information, that Ezekiel’s parents should have sought appropriate medical care far sooner than they did, and that there is a good chance he would have survived had they done so. I also believe that the naturopathic clinic and Dr. Tannis, and to a much lesser degree the family friend called upon because of her nursing background, share some of the blame.

Ezekiel Stephan is not the first child to die because of an anti-medicine world view, and he certainly won’t be the last. This is also not the last time that claims of conspiracy will be used in an attempt to distract us from a tragic and avoidable death. We don’t cover cases like this on Science-Based Medicine in order to kick grieving parents while they are down, and I have no doubt that Ezekiel’s family loved him and would probably give anything to undo what happened. We discuss these cases in order to shed light on modifiable risk factors for these outcomes and gaps in the public understanding of science and medicine.

When all is said and done, I find myself at a bit of a loss for words believe it or not. A child has suffered and succumbed to a preventable and/or treatable illness. Nothing will change that. But as I and my SBM colleagues struggle to push this boulder, knowing full well what the future holds once we crest the hill, thoughts of Ezekiel and others like him will serve as inspiration to press on.

Last minute update

A forensic pathologist has now testified regarding the autopsy findings. Dr. Adeagbo concluded that Ezekiel died from both bacterial meningitis as well as pneumonia with an accompanying empyema. Empyema is typically diagnosed in the setting of a bacterial pneumonia when pus collects within the lining of the lung.

So what does this mean? It certainly makes sense from a clinical perspective. Ezekiel likely developed bacterial pneumonia caused by infection by either S. pneumo or HiB, which went untreated and developed into an empyema. At this point surgical drainage is usually necessary for recovery in addition to appropriate antibiotic treatment. His bloodstream was repeatedly showered with the pathogenic bacteria, which eventually made its way to the child’s brain.

This new information adds to my suspicion that Ezekiel was much more ill-appearing than described by his parents and the nurse who visited the family’s home. Although there may have been some degree of waxing and waning of his symptoms, particularly with the fever he almost certainly developed during the course of his illness, I am very skeptical of claims that he had any significant recovery just prior to his arrest. This also makes it more likely that he suffered a great deal prior to his death.



