Medical child abuse can be thought of as the flip side of medical neglect; instead of failing to get real medical treatment a child needs, a child’s caregiver seeks out medical treatment that the child does not need, and which may in fact be harmful. While I addressed that in depth in my last post, today, I discuss the complications to this discovery process. What about rare diseases? How can physicians tell the difference? In this post, I address rare diseases, regulations, and mandated reporting issues.
Medical Child Abuse or Rare Disease?
While some cases of medical child abuse may be easier to identify (such as when the caregiver tampers with medical equipment), there may be considerable difficulty differentiating between fabricated illness and a rare disease. Rare or emerging diseases may not have clear, objective tests to diagnose them, or the tests may not yet be sufficiently robust for accurate diagnosis. Doctors may lack the expertise to identify a rare disease, as well, and may suspect abuse where there is none; the child may actually be sick because of the disease.
There are several features that have been identified for medical child abuse that are also seen in parents of children with legitimate, if rare, diseases:
- They often seek multiple doctors
- They may be well-versed in medical terminology
- They may seek to raise funds and/or sympathy from others
- They may be particularly assertive in asking for more extensive testing
- They insist on remaining with their child as much as possible
How is a doctor to differentiate between a devoted, loving, and fierce advocate for their child and a parent who is harming their child by seeking out unnecessary medical treatment?
It creates a very dangerous line for the health care worker to walk. If they fail to recognize the rare disease and incorrectly report abuse, the child may continue to suffer or deteriorate from lack of treatment, and the family member may face significant social and legal harm. If the health care worker fails to recognize abuse, they may not only contribute to further unwittingly harming the child, but once released to the caregiver, they are at risk for continued abuse.
Unfortunately, the lack of knowledge of rare diseases can not only make it hard for parents to find adequate help for their child, but it can also provide a ripe landscape for medical child abuse. The caregiver may gain a great deal of knowledge about a rare disease (e.g., mitochondrial disorder) and fabricate or induce symptoms in their child to simulate that disease. Without proper expertise, physicians may not notice discrepancies between the symptoms as reported by the caregiver and the known symptoms and presentation of the disease.
These challenges highlight the importance for doctors and nurses to have clear and open communication with each other, as well as for doctors to review medical notes from previous physicians rather than relying solely on the caregiver’s account of prior care. Getting as complete and accurate a picture as possible is vital to properly diagnosing the cause of the child’s symptoms, and to determine whether it is a real disease or fabricated.
All 50 states require, by law, certain classes of individuals to report suspected cases of child abuse to state officials. Mandatory reporters include doctors, nurses, and other health care workers. It is a duty that they take very seriously. They are dedicated to ensuring the well-being of their patients, first and foremost, and the stakes are very high. Incorrectly diagnosing medical child abuse holds the potential to cause serious emotional and psychological trauma to the child, or, in the other direction, it may lead to continued abuse from the child’s caregiver, and possibly even death. Furthermore, if a clinician or other health care worker reports medical child abuse, whether they are right or wrong, they put themselves and the hospital in the legal crosshairs of the family. It is not a diagnosis to make lightly.
There are no objective standards by which a report must be made, and when a report must be made can vary between states. Most, however, require the reporter to make a report when they suspect or reasonably believe that a child is being abused. They must make a judgment call based on the evidence they have at their disposal.
The Focus is the Child
Remember, though, that the focus of medical child abuse, or caregiver-fabricated illness in a child, is the child and the alleged abuse’s effect upon them. Do the caregiver’s actions result in the child being harmed by inappropriate or unnecessary medical tests and treatments? It does not matter what the caregiver’s intentions or motivations are.
They may be doing it for attention themselves, to paint themselves as a martyr.
They may be doing it out of malice toward the child.
Or, they may excessively worry about inconsequential health issues in the child, such as a cough or minor rash, or make up symptoms in order to get medical treatment they think their child needs; while their intentions maybe good, their actions ultimately result in the harm of the child.
The first step is to stop the harm to the child. That will almost certainly require that the child be separated from the caregiver, and possibly other colluding family members, for some period of time. [Edited to add: please note that this is specifically in reference to treating medical child abuse, i.e., once the diagnosis has been made and other causes, such as rare diseases, have been ruled out.] Treatment may include medical care to correct any damage done by previous treatment, as well as psychological care to address any mental harm that resulted from the abuse. It will also include therapy for the caregiver and other family members, to help them identify and be aware of abusive behaviors. This is the step where understanding the caregiver’s motivation can be most helpful, since it can help clarify what course of treatment is required. Ideally, the child will eventually be reunited with their caregiver, though this is not always possible. Some caregivers may never admit that they are responsible, or they may not develop the skills to recognize and manage their own needs to avoid future abuse.
Responding to Medical Child Abuse Allegations in the Media
When you read about a case involving an allegation of medical child abuse, understand that you need to approach it with a great deal of nuance and caution. It is an almost certain guarantee that you will not have all of the relevant facts available to you.
While the family is free to say whatever they like about the case, the medical providers are restricted by Federal law from discussing the details.
It is easy to react without thinking and cast blame on the doctors, especially when details are scarce or only come from one side of the issue. We see an emotionally distraught parent asking us for sympathy, and we want to comfort them. We understand how it would feel to have our children taken away from us. We want to believe that parents would never do anything to hurt their children, but it does happen. That emotional parent may truly be upset and want their child back, yet still be the cause of their child’s illness and harm. The pleas may be a facade, designed to evoke sympathy and attention for the caregiver, rather than an actual attempt to help the child.
Above all, remember that we all, parents and health care providers alike, want what is best for the child. Take steps to learn more about medical child abuse and the signs to look for. It may just save a child’s life.
Editor’s Note: This article was edited on 4/14/16 at the author’s request to clarify the next steps once a a diagnosis of medical child abuse has been made.
References and Additional Reading:
- Bools CN, Neale BA, & Meadow SR. (1993). Follow up of victims of fabricated illness (Munchausen syndrome by proxy). Archives of Disease in Childhood, 69.
- Burton MC, Warren MB, Lapid MI, & Bostwick JM. (2015). Munchausen syndrome by adult proxy: a review of the literature. Journal of Hospital Medicine, 10(1).
- Child Welfare Information Gateway. (2014). Mandatory reporters of child abuse and neglect. United States Department of Health and Human Services.
- Flaherty EG, MacMillan HL, & Committee on Child Abuse and Neglect. (2013). Caregiver-fabricated illness in a child: a manifestation of child maltreatment. Pediatrics, 132(3).
- Harpocrates Speaks. (2014). The case of Justina Pelletier calls for nuance and moderation.
- Harpocrates Speaks. (2014). Case of Justina Pelletier spawns dubious legislation.
- Harpocrates Speaks. (2016). The case of Justina Pelletier still requires nuance.
- Harpocrates Speaks. (2014). Justina Pelletier to remain in Massachusetts DCF custody.
- Hayes C. (2015). Medical child abuse is a problem, not a panic. Demystifying Pediatrics. (web site)
- Koetting C. (2015). Caregiver-fabricted illness in a child. Journal of Forensic Nursing, 11(2).
- Rabbone I, Galderisi A, Tinti D, Ignaccolo MG, Barbetti F, & Cerutti F. (2015). Case report: when an induced illness looks like a rare disease. Pediatrics, 136(5).
- Roesler TA & Jenny C. (2008). Medical child abuse: Beyond Munchausen syndrome by proxy. American Academy of Pediatrics.
- Yalndağ-Öztürk N, Erkek N, & Şirinoğlu MB. (2015). Think again: first do no harm: a case of Munchausen syndrome by proxy. Pediatric Emergency Care, 31(10)./