Our children are not safe. Not because of terrorists, but because it is becoming dangerous to advocate for their medical care without fear of losing them. A new charge, “Medical Child Abuse,” is now used by hospitals to remove inconvenient parents from the role of advocating for their children.
When Lou Pelletier broke a judicial gag order to speak of his family’s ordeal, he did it because he feared for his daughter’s life. Justina Pelletier had been removed from her treatment for Mitochondrial Disease by the Child and Adolescent psychiatry inpatient unit attached to Boston Children’s Hospital, Bader-5. BCH had taken custody of Justina from her parents, and had attempted to keep the story out of the public view. But when the story broke nationally through FOX News and the Boston Globe, and WRKO Radio’s conservative host Jeff Kuhner rallied 4,000 people to the front of the Massachusetts State House to protest Justina’s brutal mistreatment, and numbers on the FaceBook page A Miracle for Justina surged upwards of 40,000, one of the revelations as the Pelletier case unwound was that Boston Children’s Hospital’s research policy allows for harming wards of the state for the greater good. “More than minor deleterious effect” is the precise language. Justina, barely reunited with her family following a 16-month ordeal testified to Congress, urging them to pass “Justina’s Law” which would make research funding for an institution with such a policy illegal.
Sadly, though, this bill does not address the crux problem; the overreaching power that doctors in major medical centers and academic institution are exercising in disregard of citizens’ constitutional protections.
Isaiah Rider: The Newest Poster Child of the “Parentectomy” Movement
As Michelle Rider listened to doctors at Lurie’s Children’s Hospital express their frustration over her efforts to manage her son’s pain, a singular intention formed in her heart and mind. She wanted to help her son, so she asked for a transfer to another hospital. “We can’t help him” and “We don’t know why” are not acceptable to any mother watching her child writhe in agony. But in addition to the immediate crisis of pain management, Michelle had other concerns about the way she and her son were being treated at Lurie’s. Insinuations that Isaiah’s painful involuntary leg movements – which had begun in surgery under anesthesia – were somehow Isaiah’s and her fault were leading her to question the competence of the medical staff. Michelle advocated for a “fresh set of eyes and a fresh set of hands.”
Lurie’s staff led Michelle to believe they intended to execute a transfer; instead they brought DCFS (Division of Child and Family Services) in and, without investigation, Michelle lost custody of Isaiah based on allegations of medical child abuse. On August 11, 2014 the state of Illinois, represented by Judge Geanopoulos, supported the decision of Lurie’s Children’s Hospital and DCFS. I first spoke with Michelle Rider a few weeks after Justina Pelletier was returned home to her family in Connecticut.
Michelle told me about the day she had been intercepted by a doctor and social worker who asked to meet with her privately. They took her to an unfamiliar room where the words spoken would change her life forever.
“We are taking Isaiah away from you for 48 hours.””Why would you do such a thing? Why would you even want to do such a thing?”
“You are being charged with Medical Child Abuse”
“What is that??? I’ve never even heard of that!!!!”
When I did exactly that, the top response for “Medical Child Abuse” was a 66-page manifesto written by the University of Chicago – where Isaiah is now living against his will.
Here is the “Perpetrator Profile” of a medical child abuser – in 9 bullet points,
Perpetrator Profile, © American Academy of Pediatrics, Visual Diagnosis of Child Abuse on CD-ROM, 3rd Edition:
- Interest or expertise in medicine.
- Life revolves around child’s illness.
- “Good parent” or martyr.
- Overly comfortable with medical staff.
- Does not appear relieved with normal test results.
- Promotes invasive tests and procedures.
- Enjoys being in the spotlight.
- May have personality disorder, Munchausen syndrome, or somatization disorder.
- Not really accurate or helpful in diagnosis.
And here is why this list should – if it doesn’t already – make the hairs of your neck stand on end:
Interest or Expertise in Medicine
Parents of children with rare diseases network with other parents. They read the latest research and follow developments. They spend more time doing this than physicians seeing patients have time for.
Life Revolves Around Child’s Illness
How could a parent’s life not revolve around their sick child?
“Good Parent” or Martyr
Does any parent of a child with a rare disease deserve anything less than the highest respect and kind treatment?
Overly Comfortable With Medical Staff
If you have been advocating for a child for years in several geographic locations, you develop a certain amount of skill and confidence. You make the best of things, you extend yourself to people. Most moral traditions maintain that it’s important to treat others as we would want to be treated ourselves.
Does Not Appear Relieved With Normal Test Results
Why would a parent whose child is suffering horribly be relieved by normal test results that offer no new clues?
Promotes Invasive Tests and Procedures
If an invasive procedure might provide answers or a solution to years of suffering and isolation for a child, why would a parent not advocate for those?
Enjoys Being in the Spotlight
This, a characteristic of many people, is not related to whether a child’s illness is real or not, and therefore should not be included in diagnostic criteria.
May Have Personality Disorder, Munchausen Syndrome, or Somatization Disorder
Well, this is true. The person “may” also be at risk of being at risk of . . . having a “personality disorder.” Conservatives believe Liberals have a personality disorder. Liberals believe Conservatives are “delusional”. And many men believe their ex girlfriends are “Borderline.” Have psychiatric allegations become so much a part of our collective consciousness that they have become “facts” like height, weight, and blood pressure? Here’s a fact; the personality of the patient’s parent is none of the medical staff’s business.
Not Really Accurate or Helpful in Diagnosis
Which is it? We are not supposed to be interested and educated, but we are expected to be accurate and helpful in diagnosing?
It’s hard to imagine a group of reasonable people writing such a profile not imagining the unintended consequences. Some people wonder, therefore, if these consequences really are unintended. It has certainly been convenient for Lurie’s Children’s Hospital to acquire a research subject as rare as Michelle was told her son happens to be. Convenient also for the neurofibromatosis study on 16-year-old males, which coincidently changed to a more obscure location as the case gained media attention. We can only speculate, but in fact Chicago is the home of the National Foundation for Neurofibromatosis, where research subjects are highly prized. Prized enough, perhaps, to subject a well-adjusted, happy Kansas City boy to foster care in a dangerous neighborhood where he reports he is afraid of being shot?
Meanwhile, Chicago DCFS reports acting in the “best interests of the child.” The more powerful they become, the more right they think they are. The statement issued by the DCFS in Isaiah’s home state – that he belongs home with his mother – appears to be of little or no interest. The treatment plan offered to Michelle is essentially a ransom note. It requires her to lie, and undergo therapy for her “thought disorder.”
These unsubstantiated allegations against parents of sick children are sweeping both the United States and The UK, under the broadening umbrella of the diagnosis Munchausen by proxy, rebranded as Medical Child Abuse.
Prominent Welsh Psychiatrist Dr. David Healy, founder of RxISK.org
, has written a six part series on MBP in which he writes,
“In medicine, blaming the patient or a relative is the perfect way to hide the identity of the real abuser . . . the doctor . . . the place on this Earth where there is the greatest mismatch in power between two people is when doctors meet patients. The easiest place for an abuser to flourish is in a doctors office. Have a look there.”
At Harvard in the early nineties, Joseph Biederman made a bold offer to J&J. He offered to create a disease. In return for millions (he was later found to have concealed much of) Childhood Bipolar Disorder was invented. Through him the floodgates opened for the drugging of children with powerful cocktails of psychiatric drugs, like the one that killed four year old Rebecca Riley. The psychiatrist who signed those death prescriptions is still practicing child psychiatry at Tufts because – in fact – she did nothing illegal. Child Bipolar Disorder has made possible the extension of the brain-disease marketing strategy of the pharmaceutical industry to its most promising new market; children. Inpatient child and adolescent facilities, like Bader-5, became the darlings of mental health agency Judge Baker. At Bader-5, Dr. Dave De Maso, Chief of Psychiatry, is the renowned author of the book, “Medical Child Abuse,” which among other disturbing things asserts that interventions should occur more often because up to 50% of pediatric general admissions “may” be “Somataform Disorder.” DeMaso envisions an expansion of psychiatry to include supervision of all medical cases, because doctors are blind to their own undiagnosed psychiatric conditions.
Even scarier is the silence in the mainstream media around all this. When parents have to be willing to defend their right to be parents every time they seek the medical help that their child deserves, what kind of feudal nightmare have we descended into?
These are not medical issues. These are social, political, moral and legal issues. Medical professionals have lobbied for and achieved too much power for themselves. We need consumer laws, and legal recourse. Michelle Rider is committed to stopping what has happened to her from happening to others. As an experienced hospice nurse and red cross volunteer, she feels deeply betrayed and concerned about the medical profession she trained to work in.
People who make false accusations should be responsible for the consequences. The right to defend oneself and to face one’s accuser, the right to a fair and speedy trial, to adequate representation, the right to protection from cruel and unusual punishment . . . these fundamental elements of justice are the basic rights we secure in our agreement to be governed in this republican democracy. Clearly, these basic rights are no longer respected by today’s medical profession, and it will be up to the court of public opinion to decide what to do next. That decision will have to be legislated, and politics will be involved. As Frederick Douglass said, “Power does not concede power; never has, never will.”
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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.