STORY: "The New Child Abuse Panic," by Maxine Eichner, published ny the New York Times on July 11, 2015. (Maxine Eichner is a professor of law at the University of North Carolina, Chapel Hill, and the author of “The Supportive State: Families, Government, and America’s Political Ideals.”)
GIST: "Few things are tougher for a parent than dealing with a child’s serious medical condition, particularly if it is complicated and hard to diagnose. The parent has to make hard choices about treatment, navigating conflicting advice from doctors or even rejecting one doctor’s opinion and seeking another. Recently, the situation of these parents has gotten even harder. Some doctors and hospitals have begun to level a radical new charge — “medical child abuse” — against parents who, they say, get unnecessary or excessive treatment for their kids. That this care is usually ordered by other doctors hasn’t protected parents from these loaded accusations. Although most of these cases have nothing to do with real child abuse, credulous child welfare officials have too often supported the doctors, threatened parents with loss of custody, and even removed kids from their homes — simply because the parents disagreed with the doctor’s plan of care. Perhaps the most notorious such case is that of Justina Pelletier, a teenager who was being treated for mitochondrial disease, or “mito,” a rare metabolic disorder that interferes with energy production. ........The term “medical child abuse” dates from the mid-1990s, as a condition related to Munchausen syndrome by proxy, a mental disturbance in which a parent induces illness in a child to get attention. It has caught on with doctors over the last decade. But what constitutes “unnecessary medical care” — the heart of the test for medical child abuse — is vague and subjective. After all, doctors often disagree with one another when it comes to the diagnosis and treatment of complicated conditions. I write from experience. My husband and I are lucky not to have been charged with medical child abuse during the eight years we tried to find answers to our daughter’s mysterious illness.........As I’ve researched medical child abuse over the past year, several advocacy and support groups for patients with rare diseases told me they had seen an alarming rise in medical child abuse charges: MitoAction (which supports patients with mito); the American Partnership for Eosinophilic Disorders (disorders relating to white blood cells); the Ehlers-Danlos National Foundation (a rare disorder of the connective tissues); and Dysautonomia International (autonomic nervous system disorders). Through these groups, I’ve surveyed 95 parents who have been accused, in 30 states. Dr. Frances D. Kendall, the geneticist in Atlanta who diagnosed my daughter’s mitochondrial disease, told me that she has seen a rising number of cases in which the parents of children with mito had been wrongly charged. Dr. Mark S. Korson, the geneticist who treated Justina Pelletier at Tufts, also said that such charges have snowballed in recent years. Most states lump “medical child abuse” into general child abuse or neglect statistics, and can’t break out separate numbers. Michigan is an exception. Its figures show that, on average, 51 charges of medical abuse have been made against caretakers each year between 2010 and 2013. Extrapolating this to the national population would mean more than 1,600 charges each year. The precursor to medical child abuse, Munchausen syndrome by proxy, dates from 1977, when a British pediatrician published case studies of two mothers who had intentionally sickened their children — in one case, fatally — to get attention. However, controversy developed about whether this was a genuine psychological disorder, what motivated the mother (it is almost always mothers who are charged) and, critically, how to distinguish Munchausen mothers from those caring for genuinely sick kids. Munchausen charges were generally discredited after several mothers were shown to have been wrongly convicted based on grossly deficient expert testimony.........Sadly, while knowledge of Munchausen traveled across the Atlantic, skepticism about it did not..........Compounding the problems with the overly broad definition of medical child abuse is the considerable misinformation spread by its proponents. In 2013, a governor’s task force in Michigan stated that “many cases of Medical Child Abuse go undetected because caregivers are skilled at deceiving the medical community.” No hard evidence, however, suggests that such parents are anything but rare. Medical child abuse is far more likely overcharged than undercharged. The task force identified these warning signs of medical child abuse: a “highly attentive parent” who is “unusually reluctant to leave his/her child’s side”; a parent who “demands second and third opinions”; a parent who “is not relieved or reassured when presented with negative test results and resists having the child discharged from the hospital”; and a parent who has “unusually detailed medical knowledge.” These warning signs accurately describe many, if not most, loving parents of medically fragile children.........In its zealotry, the medical child abuse movement resembles two other panics from the recent past: the sex-abuse panic of the 1980s and 1990s and, more recently, the panic over shaken-baby syndrome. In both panics, experts saw foul play where none existed, government officials took their views at face value, and people were wrongly convicted and imprisoned, their lives ruined. Medical child abuse is causing similar harm.........We must protect children from the rare disturbed parent. But medical child abuse, as it has been understood, is far too big and blunt an instrument to accomplish this purpose. It has harmed too many genuinely sick kids, and made life hell for too many loving parents. It is time to end the medical abuse panic."
The entire article can be found at:
http://www.nytimes.com/2015/07/12/opinion/sunday/the-new-child-abuse-panic.html?emc=edit_th_20150712&nl=todaysheadlines&nlid=1155154&_r=1
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