A concept that has been well-recognized in pediatric medicine, at least since it was first described in 1964, is that of vulnerable child syndrome (VCS). Classically VCS occurs when a currently healthy child is felt to be at increased risk for behavioral, developmental, or medical problems by a primary caregiver, usually a parent, and typically follows a serious illness. It can lead to some pretty serious behavioral complications in the parent, and subsequently the child, and severely impact entire families.
In the past, I have mistakenly thought of this entity more as “sick child syndrome” but that is problematic. It implies that it only occurs in the aftermath of true illness or injury. As I will explain in detail, there is much more to the development of VCS and it is the concern of VCS in children without true medical problems that led me to amend my understanding and make the connection with alternative medicine.
Is VCS Really a Problem?
Every parent (well, most parents – I’ve seen some things), worries about the well-being of their children. The desire to protect our personal genetic repositories is hardwired. And as with many behaviors, there is a point where parental worry becomes pathologic and interferes with normal functioning. In the case of VCS, the relationship between the parent and child can be severely impacted and the consequences can be disastrous.
This irrational perception of vulnerability leads to abnormal parental behaviors, such as overprotection, difficulty setting limits and an excessive focus on future health complaints from that child. Not surprisingly, visits to primary care physicians, emergency departments and urgent care facilities well beyond what is typical for most children (several times each month in some cases), is commonly observed. Parents can also develop severe separation anxiety as well as difficulties with discipline, even to the point of allowing the child to physically abuse them.
Ultimately, these behaviors can result in the child suffering severe separation anxiety themselves, behavior and sleep problems, difficulty in school, and abnormal fixation on their own health. These children will often begin to develop psychogenic symptoms or take part in risky behaviors that further reinforce the concerns of the parent. They are often exposed to unnecessary medical testing, ionizing radiation from diagnostic imaging modalities such as CT scans, and prescription medications.
What Causes VCS?
VCS is a potential consequence of extreme parental anxiety in response to the perception of vulnerability in their child. They don’t have to actually be vulnerable, the caregiver just needs to think that they are. This anxiety tends to be initiated by the diagnosis of significant illness in a particular child, or by a high-risk pregnancy/delivery during which the life of the child or mother was felt to be at risk. But, and this is important, it can occur even when the illness in question is not serious, or when there isn’t any illness in the first place.
A large number of studies have demonstrated the occurrence of VCS in a variety of settings. This unfounded anxiety can even stem from something as seemingly innocuous as a false positive newborn screen result that is quickly determined to be spurious, or as shown in a 1967 study by Bergman and Stamm (The Morbidity of Cardiac Nondisease in Schoolchildren), even an innocent heart murmur. This common occurrence in young children led to 40% of parents restricting their child’s athletic activity even years later.
Children hospitalized early in life, even for relatively minor issues and who had full recoveries (in other words most of the children admitted to hospitals), were much more likely to have parents who assessed them as particularly vulnerable. One interesting study by Perrin demonstrated that past health issues, in this case the sequelae of premature birth, played a far larger role in determining the parental perception of vulnerability than did a current healthy status. This certainly jibes well with my anecdotal experience of having been forced to discuss my concerns of VCS with many a tearful parent as their playful toddler tears up the examining room.
Naturally, as with most disorders of a psychological nature, factors that can potentiate the untoward effects of VCS can include environmental and family stress, poor social support and low socioeconomic status. Multiple studies have shown that more educated parents are at higher risk. As to why that is, your guess is as good as mine but I don’t believe there is a causal relationship.
Another curious historical finding I’ve encountered in hyperanxious parents, and one which is commonly cited as a risk factor for VCS, is the death of a person very meaningful to the caregiver such as a family member or a sibling of the patient. In cases such as this, it is thought that the current patient has taken on a symbolic role for the parent and represents the deceased loved one. The VCS might be a manifestation of their unresolved grief. It makes sense.
What is the Role of Physicians in VCS?
I often discuss the role that medical professionals play in the development of VCS with colleagues and I am frequently disappointed with these interactions. I get the feeling that it is an issue that doesn’t receive the respect that it deserves. I think that for many providers, the fear of missing a potentially serious medical condition, even a very unlikely one, outweighs the risk of long-term psychological complications that can sometimes occur when we dust off the old diagnostic shotgun or go on investigatory expeditions with low pre-test probability of success.
There is also, I think, a general acceptance of performing tests to “rule-out” problems rather than to “rule-in” problems that are felt to be likely based on history and examination. This is common amongst medical practitioners as well as lay persons. Recently a friend asked me what harm lay in obtaining medical tests that may not actually be necessary but might serve as a means of comforting a family or physician worried about a particular disease process. The answer, of course, is that our tests often are imperfect and our ability to interpret them is frequently biased. This leads to a large number of false positive determinations and incidental findings. My wife, a pediatric oncologist and palliative care physician, calls this poking the skunk because these false positives and meaningless incidental findings can lead to more intervention, much of which has inherent risk associated with it, and they can lead to VCS in some instances.
A common example of this occurs when the prototypical febrile 15-month-old with symptoms consistent with a viral lower respiratory infection is brought into the emergency department or primary care doctor’s office during the winter months. The evidence is clear that these kids, with rare exception, do not have bacterial pneumonia and do not benefit from the routine ordering of chest films or complete blood counts but they are very frequently obtained anyway to rule out something which would require antibiotic therapy. These x-rays and labs are often equivocal or consistent with a viral lower respiratory process, but studies in these situations tend to serve as a Rorschach inkblot test with the interpreter seeing in them whatever he had already decided was causing the symptoms. In these cases, it is a bacterial process and antibiotics are prescribed. In some cases the child is admitted to the hospital for IV antibiotics because of their young age.
It is a very difficult task for a hospitalist to explain why an intervention that was just begun is being discontinued, especially one which makes such intuitive sense to a family. The physician ordering the antibiotics typically does not explain the ambiguities of such a diagnosis. They do not typically explain the extremely low incidence of bacterial pneumonia in such situations, or even discuss the difference between viral and bacterial pneumonia. They tend to walk in and confidently diagnose a bacterial pneumonia, and the use of antibiotics for pneumonia is seemingly hardwired in the psyche of the general public.
So when I stop the ceftriaxone, and begin talking about viruses and the reassuring chest x-ray obtained the night before, I sometimes meet up with parental anxiety and resistance to supportive, non-pharmaceutical interventions. On many occasions, I’ve seen these families during future admissions where a history of previous bacterial pneumonia is still given despite my prior attempts at education.
Sadly, I also have experienced on many occasions the subsequent concerning changes in how these children are cared for. Secondary to concern for another episode of bacterial pneumonia, these parents have sought out emergency care in the middle of the night for what is clearly another viral infection that could have been treated at home, or could have been easily handled by their primary care physician the following morning. I have cared for children whose parents believe they have had several episodes of bacterial pneumonia (which if true at a young age would be a red flag for a variety of serious predisposing conditions) that, based on review of old documents and films, were actually viral.
How Can Physicians Prevent VCS?
The key to preventing VCS is awareness of the concept and of the situations which might lead to its development, and the practice of science-based medicine. Avoiding unnecessary medical interventions is vital. We should also attempt to avoid exaggerated retrospective focus on past illness/injury and unintentionally alarming comments. But more important is recognizing the early stages of VCS, which can be aided by the use of available validated screening tools, so that proper psychological intervention can be initiated.
Alternative Medicine and VCS?
So what is the connection between alternative medicine and VCS? It is actually pretty obvious and I’m feeling rather sheepish about not having thought of this before. The science-based practice of pediatric medicine and the confusing jumble of unproven modalities lumped under the term “alternative medicine” differ in many ways. One of the most prominent is the plain fact that when a child is brought to a practitioner of (insert random alt med entity), or that child’s parents visit the website of a proponent of such an entity, they are rarely if ever told that nothing is wrong.
There is always something that can be fixed in the world of irregular medicine, often with multiple visits or supplements which just so happen to be sold right there in the office or by the author of the website. Chiropractors tend to find subluxations. Practitioners of traditional Chinese medicine discover stagnant chi. Naturopaths uncover ill effects of a toxic world. Numerous quacks order blood tests designed to confirm their suspicions of harmful heavy metal levels. Countless websites tout hypothyroidism and adrenal fatigue as near ubiquitous etiologies for any symptom you can dream up. Or maybe it is all because of abnormal body acidity. Or yeast. Or liver flukes. All of these have been proposed as the cause for almost all illness, and everybody is sick.
In contrast, as a pediatric hospitalist, someone who by definition only takes care of children sick enough to be admitted to a hospital, I still spend a large percentage of my day reassuring parents and patients that things are going to be okay, that their child’s condition is self-limiting or treatable, and that they will return to full health. On many occasions I prescribe no treatment at all, and participate in what has been called “masterly inactivity”, the calculated observation of a child in order to avoid unnecessary testing or pharmaceutical intervention. In the day-to-day workings of a primary care doctor, the overwhelming majority of visits are for well child check-ups or self-limited complaints with most receiving only advice and reassurance. We are able to do this because most of us strive to base management decisions on the best evidence available, as free as is humanly possible from biased interpretations and certainly free from the impact of an irrational devotion to any unscientific and unproven belief systems. There are exceptions of course, but these are not common.
I am forced to recognize that despite my best efforts to reassure some families, there will be times when a pathologic anxiety will develop. To give just one example, it seems painfully obvious that if the family of a healthy child brings their child to a chiropractor, and were told that one or more subluxations exist which need immediate treatment and long-term maintenance treatment to prevent their recurrence, that the risk of VCS would be very real. Just google the terms “SIDS” and “subluxation”, and you will find chiropractic websites and articles discussing that connection (or read my last post). Now imagine the fear that some families must go through believing that their child is at risk of dying in their sleep if they don’t see a chiropractor, as is recommended by many of them, in the newborn period. This is just one of many innumerable examples of alt med practitioners sowing the seeds of fear and anxiety by validating fictional problems. There are worse, much worse examples.
Unfortunately there is a lack of recognition of this problem by a large percentage of legitimate healthcare practitioners. An example of this was the 2010 publication of an article on the ethics of complementary and alternative medicine in Pediatrics in Review. Pediatrics in Review is a journal published by the American Academy of Pediatrics (AAP) and is geared towards continuing education for pediatricians. It contains review articles, quizzes and cases designed for maximized learning, and it is heavily used by pediatric residents. I’ve been reading it monthly since 2003 and have noticed the steady creep of alternative medicine nonsense into its pages, usually with review articles on the use of alt med for specific medical diagnoses. These articles tend to be poorly written and seem to rely on misinformed or biased sources such as the National Center for Complementary and Alternative Medicine (NCCAM), a propaganda machine for alt med that has also wasted over a billion taxpayer dollars on studying alternative practices with zero plausibility and heaps of prior negative studies. Sadly much of their budget goes towards supporting biased unscientific alt med education in medical schools, hence my use of the word propaganda.
Although this particular article was perhaps a little better than many treatments of alternative medicine by the AAP, it still left a lot to be desired. At no point in the discussion did the risk of VCS come up. I believe that although there are greater potential risks of exposing children to these unproven modalities, the development of VCS should certainly be included.
Another key component of science-based medicine is self-correction. There are heaps of studies on VCS and expert recommendations on how to limit it. There is a glaring lack of attempts to recognize and root out dangerous or ineffective practices in the alt med community. And when studies are done that show something doesn’t work or is potentially dangerous, they are generally ignored or denigrated by believers.
I don’t have high hopes that chiropractors, for instance, will shape up because of concern for the development of VCS. The worried well are the bread and butter of alternative practitioners. We shouldn’t give up of course. And increasing awareness of the harms of unnecessary testing within the ranks of conventional healthcare professionals is also necessary. The Choosing Wisely initiative is a good example of how to do it. The American Academy of Pediatrics recently submitted their list of 5 tests and treatments to question, and more are on the way. Will we see contributions from the world of alternative medicine?