key: cord-032017-h0cj4izx authors: Roach, E. Steve title: Child Neglect by Any Other Name date: 2020-09-17 journal: Pediatr Neurol DOI: 10.1016/j.pediatrneurol.2020.09.006 sha: doc_id: 32017 cord_uid: h0cj4izx nan If 50 million people say a foolish thing, it is still a foolish thing. Anatole France Barely three weeks old, the baby lay fighting for life due to intracranial hemorrhages resulting not from physical trauma, but from medical neglect. Child neglect includes knowingly failing to protect a child from preventable harm. His parents had refused the administration of vitamin K after birth. Why? Because they didn't believe in doing things that are not "normal and natural." Sadly, failure to administer vitamin K to newborns, typically a single injection or a series of oral doses, has become commonplace in the United States, allowing a resurgence of the deadly hemorrhagic disease of the newborn that had become almost non-existent in Westernized countries. 1 Schulte and colleagues noted that 28% of the babies born in private birthing centers in their area and 3.4% of the babies born at their own academic medical center failed to receive vitamin K after birth, with sometimes tragic results. 2 At first "normal and natural" sounds like a sweetly quaint and wholesome approach, until one considers the brutal reality of what it could mean to a child's chances of survival if fully implemented. In 1800, when things were certainly very "natural," only 57% of children survived to age five. A century later, that number had improved slightly to about 65%. In recent years, over 95% of children survive to age five years. 3 Much of this stunning improvement in child mortality resulted from prevention and treatment of infections through improved sanitation, the development of antibiotics, and vaccines targeting once deadly and crippling diseases. No rational person would wish to experience those terrible losses again. Indeed, rather than letting nature take its cruel path no matter how devastating the consequences, we should be trying to improve on the natural course in order to optimize each child's chances to survive and thrive. Refusal of vitamin K administration shares with vaccine denial an unwillingness to accept the sound scientific evidence supporting the practice. Lulled into complacency by the lower frequency of deadly contagious diseases in recent decades and gullibly accepting the internet-amplified comments of prominent but misinformed celebrity "spokespeople," too many parents discount the compelling proof of the safety and effectiveness of vaccines. Some parents may be merely afraid and unaware of the facts, and they need only appropriate information and respectful guidance. These parents are merely advocating for their child's well-being. Others seem to be so firmly entrenched in their beliefs that no amount of proof will change their mind. Like their sister skeptics, the "climate deniers," the vaccine deniers defiantly dismiss any contrary information, and the introduction of additional scientific evidence only seems to strengthen their confidence in the correctness of their own unsubstantiated beliefs. We physicians must bear some of the blame here, as do many of our elected officials. By feebly accepting vaccine denial as even approaching a rational option, we become enablers of inappropriate choices by individuals who are ill-equipped to weigh the evidence or choose to ignore it. Not all physicians have been so complacent, of course. The American Academy of Pediatrics has consistently and strongly recommended immunizations, although they could have been more direct in discussing the ethical failure that parental denial of immunizations represents. Some individual physicians have taken a strong stand on the need for immunization despite the online bullying by militant vaccine deniers that often ensues. But on the whole, our collective response has been anemic. Admittedly, physicians are placed in a very difficult situation when dealing with vaccine deniers. Beneficence on behalf of the child, whose welfare is their primary concern, compels physicians to advocate strongly on behalf of the benefit that vaccines convey to that child. They may have a secondary obligation to educate the child's parents about the value of immunizations, but the child's wellbeing is paramount. As surrogate decision makers for their child, parents also have an ethical duty of beneficence that obliges them to embrace scientifically established procedures that will increase the child's likelihood of health and well-being. In parallel, the physician also has an obligation to avoid the spread of preventable infections in other children in their practice. And while discharging the unimmunized child from the physician's practice may initially seem like a plausible solution, abandoning the child because of their parents' failure to act in their child's best interests may not be the best approach. Physicians need to avoid "science speak." We sometimes obscure the facts with thickheaded comments such as "there is no epidemiological evidence for a causal association" when we should say simply and directly that an assertion is "blatantly false." Even the somewhat euphemistic term "vaccine hesitancy" lends a noblesounding aura to a very irrational and potentially deadly thought process. Trying to "engage" families in order to educate and convince them of the wisdom of immunization is fine for the parents who want information and are willing to accept guidance, but this approach is clearly wasted on the entrenched vaccine deniers. Perhaps our message needs to also directly articulate the concept of vaccine denial as a form of child neglect. The vaccine deniers may continue to ignore the scientific evidence, but at least there would be no room for doubt about what we physicians recommend. There is nothing good about the current novel coronavirus pandemic that is sweeping the globe, but if hundreds of thousands of coronavirus-related deaths serve to make some of the skeptics finally grasp the deadly seriousness of infections in a world without vaccines, it will have at least achieved something. A few of us can remember the similar terror surrounding the epidemics of poliomyelitis before the advent of vaccines, and none of us want to see children die from bacterial meningitis again. One hopes that the vaccine deniers will opt to accept a coronavirus vaccine when it becomes available, although recent outbreaks of preventable illnesses such as mumps and measles among immunized individuals seem to have opened few closed minds. The administration of vitamin K is about as close as one ever gets to risk free. Similarly, the safety and efficacy of vaccines have been thoroughly established. Vaccines do not cause autism, a bogus but persistent notion that arose from a long-since retracted 1998 publication containing fabricated data. 4, 5 About four children per 100,000 children have a febrile seizure after receiving an immunization, 6 arguably fewer children than would experience a febrile seizure during the very illnesses prevented by the vaccines. A few children have medical reasons to avoid specific vaccines, but immunizations are overwhelmingly safe. 7 The bottom-line question is "Does the potential benefit of an immunization exceed the likelihood of an adverse effect?" If the answer to this question is unequivocally yes, which it almost always is for immunizations, then refusal to allow vaccination after being fully informed of the facts amounts to child neglect. 8 Parents are afforded broad freedom to raise their children in keeping with their own culture and values. Provided that the child is not harmed, this approach is appropriate. But injuring a child, purposely denying adequate nutrition, and failing to protect a child from preventable risk, even in the name of discipline and decorum, is taboo in most civilized cultures. Ultimately a child's right to exist, free of avoidable injury or illness, should supersede a parent's right to do whatever they wish when rearing their children. Parents are not always allowed to deny well-validated medical treatments for their children. A parent who attempts to deny a child chemotherapy for acute lymphocytic leukemia, for example, is typically met with a court order terminating their custody of the child until after she undergoes the needed chemotherapy. Chemotherapy drugs have many serious side effects, so one can easily understand how a parent might want to avoid the whole situation. 9,10 But in the end, the child's right to live, or in this example, to maximize his odds of surviving, trumps the parents' desire to avoid chemotherapy. So why are parents allowed to forbid the administration of life-saving vaccines or vitamin K but not allowed to deny cancer chemotherapy? Leukemia represents a clear and present danger to the child, while vaccines reduce the risk of disease that might or might not occur. No doubt the looming certainty of death from untreated leukemia makes it easier for the authorities to summon the courage to act, but is there an acceptable threshold for allowing a preventable risk? How much avoidable risk to a child is too much to ignore? If the imminent danger argument were reasonable, then how does one explain required car seats for children? Most car trips do not result in accidents, after all, but some of them end just as tragically for the unrestrained child as would untreated leukemia. The car seat requirement is designed to maximize the odds of a child's survival in the event of an accident, and it has nothing to do with whether the danger is imminent. Why are vaccines not viewed in a similar fashion? Of course, few things are simple. The likelihood of some preventable infections is considerably higher than others. Measles and mumps outbreaks are increasingly common, for example, while polio is nonexistent in much of the world. Some of the benefit of immunizations is societal rather than individual, and vaccine denial would result in far more disease were it not for the herd immunity resulting from the responsible immunization of most children. Is it fair for an individual's rejection of established scientific evidence to place their child and other people at risk in the name of personal freedom or preference? Is it fair to ask others to accept the human suffering and financial burden resulting from infections that could easily have been prevented? Parents also have an ethical responsibility to not promulgate preventable disease in other individuals. The argument that it is acceptable to decline vaccines because they have risks is utter nonsense, because the likelihood of preventing a disease with a vaccine is higher than the risk of a complication. 8 The family's cultural background, intentions, and level of sophistication may sometimes be relevant when defining child abuse and neglect, but never to the point of justifying a child's injury or exposure to preventable risk. While visiting the Middle East, I once encountered a Bedouin child with failure to thrive and hypotonia. She had numerous oval pigmented lesions on her abdomen resembling burn scars. In Western countries, the sight of intentional burn marks on a malnourished child would send most of us scurrying to notify the authorities. But cautery is a commonly employed folk remedy in her culture. 11 Her burns had resulted from application of a hot spoon from the campfire to her abdomen, the site thought to be responsible for her poor weight gain. Was this child abuse? The family's intent was to help the child, not to hurt her, cautery was an accepted traditional ritual in their culture, and their ability to learn about better options may have been limited. Yet she suffered avoidable burns and her failure to thrive was not quickly assessed by physicians, so she was harmed, despite the family's benign intentions. One might argue that vaccine denial represents a similar situation. The vaccine deniers do not intend to harm their children, of course, and in some circles, withholding vaccines is so prevalent and so entrenched that it resembles a primitive cultural belief system. But most Western families who fail to immunize their children know about vaccines and have ready access to physicians and nurses who could clearly explain their risks and benefits. Yet some of them opt to deny the solid science that would give their child the best odds of staying healthy. I will at least give the Bedouins some benefit of the doubt. It is time to stop the political correctness and "science speak." Parents should have the right to raise their children in accordance with their own preference, culture and religious beliefs, provided that their approach does not substantially increase the child's odds of an avoidable illness or injury. But given the extremely low risk of immunization and vitamin K administration, the bar for "substantial" risk should be extremely low. Vaccine denial may not cross a threshold that triggers harsh measures by the authorities, but there should be no acceptable preventable risk. No matter how wellintentioned the decision may be, the willful, informed avoidance of scientifically proven measures that would improve a child's odds of optimal health and survival amounts to child neglect. Physicians must rise with one voice and say "enough!" By even considering the premise that vaccine denial can be a reasonable choice by a rational individual, we become enablers of child neglect. Intracranial hemorrhage in early infancy--renewed importance of vitamin K deficiency Rise in late onset vitamin K deficiency bleeding in young infants because of omission or refusal of prophylaxis at birth Ileal-lymphoid-nodular hyperplasia, nonspecific colitis, and pervasive developmental disorder in children Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children Febrile seizure risk after vaccination in children one to five months of age Responding to parental refusals of immunization of children Professional responsibility and early childhood vaccination Neurological complications of the treatment of pediatric neoplastic disorders A Review of chronic leukoencephalopathy among survivors of childhood cancer Ancient Mideast cauterization practices and developmentally delayed children: A call for advocacy