Last year 7-year-old Seth Johnson died of pancreatitis. His parents, Timothy and Sarah, are now on trial for one count of child neglect.

These are always heartbreaking stories, especially for a parent. Strong and conflicting emotions are stirred – on the one hand I feel anger and resentment toward the parents, who allowed their child to needlessly suffer and die. At the same time I also feel sorry for the parents. There is nothing worse than the death of a child, except feeling responsible for that death yourself. The state can add little to the emotional punishment they must be already experiencing (although they should try damn hard).

Seeing such parents as victims is not a popular position. It is much easier to see them as villains, even demons. I always strive to see reality in all its complexity, and as a result I often conclude that such parents are some combination of villain and victim. My thoughts also come with the huge caveat that I am getting all my information from the media, and do not have direct access to the medical information or the parent’s story.

With that in mind, taking the media’s telling of the story at face value, this is what allegedly happened: Seth became ill, but his parents did not want to take him to a doctor because they feared they would just give him dangerous medicine. According to reports:

Instead, they decided to do their own research and eventually decided that Seth’s symptoms indicated that he had a combination of “post-traumatic stress disorder, a brain injury and fetal alcohol syndrome.”

Then comes the most dodgy behavior by the parents – they left town for the weekend and left Seth in the care of an older sibling. When they returns, Seth was much sicker, barely able to move. They treated him at that time with prayer, and still did not bring him to medication attention. The next morning Seth was unresponsive, which finally prompted a 911 call, but they were only able to pronounce Seth dead. The medical examiner found Seth, “had bruises and contusions on his cheek, forearms, chest, buttocks and lower abdomen,” and his “weight was exceptionally low for a child his age.”

Apparently Seth had a serious case of pancreatitis. This is something entirely treatable. I’m not sure what the bruises were from – the parents claim Seth had thrown himself down the stairs. He was also vomiting and not eating prior to his death, which are common symptoms of pancreatitis.

Cautionary Tale

I often write about such stories because they are cautionary tales. They are extreme cases which establish basic principles that apply in less extreme situations. I also put such stories into the context of my own experience with patients.

Obviously there was something seriously wrong with the care allegedly provided by the Johnsons. I personally cannot imagine leaving an extremely sick child alone with a sibling for a weekend. I further cannot imagine returning home to find that child even more sick and still not seek emergency medical attention. They adopted Seth, so I presume that they were screened in some way and are likely not criminal psychopaths (although their adoption screening should certainly be reviewed).

So what happened? Of course, I don’t really know, but here are some possibilities. Reports indicate that they feared doctors would prescribe Seth medication. I often encounter what I consider to be an unreasonable fear of medication. To be clear, the risks of using medications should be fully respected, and they should be used sparingly and carefully. Like all treatments they should be considered in the context of risks vs benefits.

However, I find some people have bought too heavily into the anti-Big Pharma, natural health propaganda and feel that all drugs are bad all the time (unless of course they are herbs, in which case they are magically fine). This is not a rational or evidence-based position.

The Johnson’s behavior also suggests a negative attitude toward the medical profession. This is now part of the culture, heavily promoted by alternative medicine and “natural health” propaganda. Such negativity is a preemptive strike against the professionals who might call out health fraud for what it is. This is all part of the harm that results from unscientific medicine, but it is very difficult to measure.

Another cautionary tale hiding in this story is trying to be your own expert. The Johnsons went online and diagnosed their son with “post-traumatic stress disorder, a brain injury and fetal alcohol syndrome,” when in fact he had pancreatitis.

This is also a very common occurrence. This is part of the greater phenomenon of people thinking that access to Google makes them an expert. Medical diagnosis can be very challenging. When non-clinicians try to diagnose themselves or others they tend to follow a simplistic approach, usually looking at a list of symptoms and seeing if it matches their symptoms. This is an extremely flawed approach.

First, such an approach is prone to confirmation bias. You will tend to be more influenced by any apparent matches than symptoms that don’t match. Also, lists of symptoms can be very suggestive.

Even more significantly, however, non-experts do not have the experience and knowledge to put symptoms into context. Some symptoms are vague, and others are non-specific. What you really need to know is how predictive the presence or absence of a sign or symptom is. A list of symptoms does not tell you this.

For example, fatigue may be a symptom of disease X and you may be feeling fatigue, but the fatigue is so common that the presence of fatigue may have essentially no predictive value that you actually have disease X. Disease X may also come with a rash on the face, which you don’t have. You may think that the absence of that rash is no big deal, but a knowledgeable clinician may know that the absence of the rash essentially rules out the diagnosis. Or you may think that being flushed counts as a rash, because you have never seen what the real rash of the disease looks like.

All of this must also be put into context of how common the disease is, and what mimickers of the disease exist and how common they are. There are lots of factors that need to be carefully weighed. Further still, clinicians do not then make one diagnosis, they make what is called a differential diagnosis – a list of all the possibilities ranked by likelihood.

Diagnostic skill takes years to develop. You cannot just look up a list of symptoms on a website and make a diagnosis. If you do feel the need to look up information about your symptoms, which is fine, that should not replace seeing a doctor. Being informed is good, but kibitzing your health care has a net negative effect on your health outcomes.

The final piece to the puzzle of Seth’s death is apparently religious faith. All I have to say about this here is that parents do not have a right to sacrifice their child to their faith. Competent adults can refuse health care for whatever reason they want, but they cannot refuse necessary medical care for their children, for any reason. Most states have proper laws about this, but some do not. Courts also tend to be shy about imposing penalties on parents for actions taken out of faith, but this is a mistake. The courts have a responsibility to protect children, and that means prosecuting parents who neglect them. Religion is no excuse.

Conclusion

This is yet another sad case of child neglect. The story hints at many possible cultural and psychological factors at play. I don’t know to what extent they were really factors. The parents may just be terrible people, and these are all just excuses. Even still, the fact that they feel they justify their behavior is significant.

I and others will keep discussing these stories because it is important to shine a bright light on them whenever they occur, to make sure the lessons are not forgotten.