To be sick with a rare disease and to be doubted by medical professionals as to the truthfulness of symptom reporting and disease progression is absolutely devastating, especially where questions of parental fitness and child custody start to arise. It is MitoAction’s hope that the pages below will help families better navigate the medical system and feel more equipped to respond to such claims should they arise, and that practitioners will have more sensitivity to the impact of such terrible allegations on families.
Mitochondrial disease varies greatly in its presentation and affects a wide range of body systems and organs. Testing is not clear-cut and is continuously evolving, and most practitioners are not familiar with the spectrum of possible
symptoms. As a result, Mito patients and families become the subject of Munchausen Syndrome, Munchausen Syndrome by Proxy (MSBP) and Medical Child Abuse allegations far more frequently than those with more well-described diseases. Hospitals are often too quick to separate children from parents suspected of Medical Child Abuse, adding even more stress and trauma to an already difficult situation.
Moreover, virtually every adult mitochondrial disease patient has experienced questioning from medical professionals regarding a potential psychological underpinning for their symptoms, which often can delay diagnosis for months or years. Claims that adult symptoms are “psychosomatic,” “malingering,” “factitious,” “functional neurologic” or “somatoform” are hugely detrimental to patients and families and bring with them tremendous psychological and physical consequences.
Munchausen Syndrome, now listed in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) as “Factitious Disorder Imposed on Self,” is an adult psychiatric condition in which a person fakes symptoms of illness in order to draw attention to him or herself. When a parent or caregiver fakes a child’s illness to garner attention and sympathy, the disorder has historically been known as “Munchausen Syndrome by Proxy” (MSBP), and now is called “Factitious Disorder Imposed on Another” in the DSM-5. While rates of occurrence are very difficult to determine, Munchausen Syndrome is thought to have a prevalence rate of less than 1% and Munchausen Syndrome by Proxy is exceptionally rare, with a prevalence rate of 0.5 to 2 per 100,000.
Medical Child Abuse (MCA) is a recently defined form of child abuse in which the primary caregiver (usually a parent) is accused of “overmedicalizing” a child. The caregiver is accused of falsifying a pediatric medical condition or exaggerating symptoms, which often leads to the child undergoing a number of unnecessary and potentially harmful hospitalizations as well as invasive procedures and tests. Intent of the caregiver no longer needs to be considered for an allegation to be brought against a parent; accordingly, more and more families are falling under the MCA umbrella.
While claims of Munchausen Syndrome and MSBP have long plagued the mitochondrial disease community, the issue of Medical Child Abuse in the Mito community came to a head in 2013 when a family caught in the middle of a diagnostic dispute between two hospitals lost custody of their child with a presumed mitochondrial disorder for more than 15 months. With similar cases cropping up around the country, MitoAction empaneled an Advocacy Task Force comprised of medical professionals, attorneys, adult patients, caregivers, and parents who had themselves been accused of Munchausen’s Syndrome by Proxy or Medical Child Abuse. The goal of the Advocacy Task Force is to create educational and awareness materials that would address the concerns of the mitochondrial disease community with respect to such allegations.