When Desperate Parents Are Wrongly Accused of Abusing Their Very Sick Kids

Imaginary fears


Sick kid

If you have a child who is very sick, you will move heaven and earth to get that kid care. Unfortunately, there's a possibility that this assiduousness will trigger suspicions of abuse. In a horrifying, supremely well-sourced op-ed in The New York Times, the mom of a girl who suffered from inexplicable headaches, nausea, falls, and pain, explains how other people in her situation have lost their kids to child protective service agents who imagined abuse where none exists (links added):

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.

The author of this piece, Maxine Eichner, a professor of law at the University of North Carolina, recounts possibly the most outrageous case of government hysteria and cruelty regarding a very sick child:

…Justina Pelletier [was] a teenager who was being treated for mitochondrial disease, or "mito," a rare metabolic disorder that interferes with energy production. On the advice of a metabolic geneticist at Tufts Medical Center who was treating her, she was admitted in 2013 to Boston Children's Hospital, so that she could see her longtime gastroenterologist, who had recently moved there. Without consulting the girl's doctor at Tufts, Boston Children's concluded that the girl's problem was not mito, but largely psychiatric, according to The Boston Globe.

When her parents disagreed and sought to transfer her back to Tufts, Boston Children's called child protection, asserting that the parents were harmfully interfering in her care. Although the Tufts geneticist supported the mito diagnosis, a juvenile court judge deferred to Boston Children's assessment, and Justina's parents lost custody. After more than 16 months in state custody, much of it spent in a locked psychiatric ward, Justina was finally returned to her parents — still in a wheelchair, still sick.

What does this have to do with Free-Range Kids? Everything. The whole premise of this movement is that our children are not in constant danger—not from kidnapping, not from un-fingerprinted school volunteers on a field trip, not from crayons (this week's New Fear), and not from parents at their wits' end.

Eichner discusses Munchausen syndrome by proxy, whereby some parents may exaggerate or even create their child's illness to get attention. But she puts it in perspective: It is exceedingly rare. We talk about it (and see it on TV) for the same reason we talk about Satanic child abusers: it is that outrageous. But being outrageous doesn't make it common. It is certainly far less common than frantic parents trying to help children with difficult-to-diagnose illnesses.

As a society, we sometimes seem determined to imagine anyone having anything to do with kids—including their own parents—as monsters. This is what happened to the Meitivs in Maryland: The parenting decisions they made out of love and rationality were interpreted as harmful. The real monsters today are the ones who see "child abuse" even when staring at kind, compassionate adults.