Parents Organize in Europe, Make Serious Progress

Our sister organization in France, the group who provided our new logo, has caught the attention of Le Monde, which Wikipedia calls “one of the most important and widely respected newspapers in the world.”

Association Adikia put up their web site and facebook page just last month, although some of the members have had a Facebook presence for some time. Last week Le Monde published a letter from key organizers explaining who they are, what the problem is, and what they plan to do.

Here is a Google translation of the published letter:

We are wrongly accused of abusing our children as a result of misdiagnosis”In a tribune in “Le Monde”, a hundred parents testify to their fight, accused of violence on their children while they are suffering from a rare disease. They created the Adikia association to advance their cause to justice.

We are more than a hundred parents wrongly accused of abusing our own children as a result of misdiagnosis. Two and a half years ago, one of us created a Facebook group to tell her story. This is where we found ourselves over the months after experiencing the same dramatic situation.

While we consult pediatric emergencies for our babies who are uncomfortable, doctors detect signs a priori suggestive of abuse. These are mainly fractures, bruises, or bleeding inside the skull and eyes (subdural hematomas and retinal hemorrhages). These last two signs are typical of the “shaken baby syndrome”.

In our case, however, our children have various rare diseases. For example, the son of Virginie (creator of the group) is suffering from hypofibrinogenemia, a rare genetic abnormality of blood coagulation. As indicated by the report of the High Authority of Health on the subject, disorders of coagulation form an important class of differential diagnoses of shaken baby syndrome.

Unjustified accusations

The son of Vanessa (president of the association) is one of the many babies in our association with external hydrocephalus. Clinical studies suggest that this pathology may favor the occurrence of subdural haematomas. Marielle’s daughter has osteogenesis imperfecta, or glass bone disease, which can cause fractures. Emi has hypophosphatasia and her son has bone fragility associated with vitamin D deficiency.

In an emergency, however, doctors must diagnose quickly and act if they feel the child is at risk in their family. They make a report, which leads to the almost automatic placement of our children. They are withdrawn while we are taken into custody and questioned by the police.

As if dealing with the suffering of our babies was not enough, we must also suffer unjustified accusations of abuse. Worse, we must live with the idea that our babies will have to spend the next months or years away from us, when they are sick and need all our love. Their first steps, their first laughs are stolen forever. Strong emotional ties with parents are essential for the neuropsychological development of babies, as pediatrician Catherine Gueguen has shown. We have all had suicidal thoughts, but we must absolutely stand firm for our children.

The placements end when the juvenile judges finally feel that we are not dangerous. In a way that is difficult to understand, we are criminally prosecuted when the judicial expertises are carried out. Specialized maltreatment doctors seem to validate the violence systematically, even in the presence of rare and unknown diseases. We have a hard time getting specialists in rare diseases to do their own expertise, even more when the medical records of our children are seized by the courts!

The example of the little Luqman is characteristic. At 16 months, he spent 13 away from his parents. More than a year ago, he had hemorrhaging leading to a diagnosis of shaken baby syndrome. An extremely severe vitamin K deficiency (necessary for blood clotting) was quickly detected. It appeared later that Luqman had abetalipoproteinemia, a rare genetic disease that could cause such a deficit. According to several doctors, this disease could explain the symptoms.

Shaken baby syndrome

Today, Luqman is still placed, and his parents are indicted. For the legal experts who have access to the whole file, the signs presented are characteristic of shaken baby syndrome and the diagnosis of abuse is therefore certain. Can we really be certain that this disease, which affects less than one in a million babies, can not cause subdural haematomas and retinal hemorrhages?

We have trouble making it clear to the various speakers that the words of doctors and experts never have absolute truth. We must all show the greatest humility before the complexity of the human body. We do not know everything about medicine, far from it.

We have created our association – Adikia – to support and inform those unfairly accused, to make our testimonies known to the public, and to gain more weight in court. We would like doctors to take every precaution, as far as possible, and for the judges to consider all the elements of the files. Decisions as serious as long-term placements or prison sentences must not be made solely on the basis of medical evidence, however clear and categorical.

We would also like to be involved in improving the reporting and diagnosis criteria for suspicion of abuse. Our goal is to avoid unfounded accusations and unjustified placements as much as possible while respecting the sound and indispensable principle of child protection.

Virginie Skibinski and Vanessa Keryhuel, for the Adikia association.

Association Adikia had  reached out to other parents’ organizations, including Protecting Innocent Families, and Italian artist Chiara Zini provided customized versions of the logo she designed for several of us. For more of Zini’s work, see the beautiful and touching site una Mamma, un Papá.

-Sue Luttner

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British High Court Reinstates Dr. Squier

SquierProfileNoCaptionIn a decision that recognized some but not all of the problems with the  judgement last spring against Dr. Waney Squier, the British high court has reinstated her right to practice medicine  and refuted the tribunal’s findings that she had acted “dishonestly.”

The development has inspired a surge of coverage and commentary. If you want to show support for Dr. Squier, you can go give a thumbs-up to several on-line letters to the BMJ written in her defense:

The story has also been covered by the BBC (“Shaken baby evidence doctor reinstated“), The Justice Gap (“High court finds “‘serious irregularity’ in decision to strike off Waney Squier“), and The Times (“Why I denied shaken baby syndrome“—you can access the entire story by registering your email address and some other information).

Meanwhile, as reported on the “In the News” page on this site, a panel of Swedish scientists has declared shaken baby syndrome unproven, generating a story in New Scientist. A New York state appeals court has reaffirmed the reversal of the murder conviction of child care provider René Bailey, convicted in 2001 by medical testimony that a child cannot die from a short household fall, but freed in 2014 after an appeal by pro bono attorneys.

Innocent Families Stand With Dr. Waney Squier

WindowLogoThe General Medical Council (GMC) in the UK announced last week that it has removed pediatric neuropathologist Waney Squier from the medical register, meaning she will no longer be allowed to practice or to testify as an expert witness. The move is a setback for parents falsely accused of child abuse, as Dr. Squier is one of the rare, brave physicians who both understand the problems with shaken baby theory and express their opinions openly, in the journals and in the courtroom.

Protecting Innocent Families, Inc. responded with a letter to the GMC in support of Dr. Squier, which we also sent to the newspapers that had reported the sanctions. That letter appears at the end of this post. So far, our letter and cover note have been quoted at length in a treatment by Matt Oliver at the Witney Gazette in the UK, “Campaign group defends ‘dishonest’ doctor struck off medical register for ‘shaken baby’ evidence,” and by Christina England at Health Impact News, “Shaken baby syndrome expert and world renowned pathologist banned from practicing medicine.” (Do not be thrown by the lead in the Gazette piece—we have not started a petition of behalf of Dr. Squier; we think it’s a misunderstanding of our Protecting Innocent Families petition.)

Gratifyingly, the GMC’s move has also triggered some serious public debate, including a series of opinions and counter-opinions in The Guardian (today’s:  “The Science of Shaken Baby Syndrome“). The On SBS blog just posted a summary of the press response to the GMC’s decision.

At least this setback seems to be an opportunity to raise awareness about a flawed theory that’s still winning in the courtroom.

The text of the letter we submitted to the GMC:

Honourable Council Members,

We are writing in the defense of Dr. Waney Squier, a pediatric neuropathologist who was struck off the medical register this week for practicing outside her area of expertise, ignoring the opinions of her peers, and bringing the reputation of the medical profession into disrepute with her testimony and written opinions in a series of shaken baby cases she helped defend between 2007 and 2010.

We know from personal experience that the prevailing model of shaken baby syndrome is flawed, a fact that is also supported by peer-reviewed literature. Although shaking an infant can cause serious injury and death, the presence of the intracranial and retinal findings now associated with shaken baby syndrome does not prove abuse, which is the vital message Dr. Squier brings to the debate. We are dismayed that the Council is sanctioning her for having the courage and intellectual honesty to express her own views, which are not popular but which are founded on solid scientific thinking and the best available evidence. Many of these diagnoses are based on the presence of non-specific findings (thin subdural hematoma, retinal hemorrhages, and encephalopathy) that can be associated with a number of medical conditions and accidental trauma as well as inflicted injury. It is a logical error to conclude that because abuse can cause the findings, the presence of the findings proves abuse.

We are a coalition of innocent families accused of child abuse and the scientists, physicians, attorneys, and neighbors who support us. We have been calling for an impartial, scientific review of the evidence base for the diagnosis of shaken baby syndrome and other forms of child abuse by an objective body of scientists who can evaluate the known facts. Your decision regarding Dr. Squier illustrates how seriously such a review is needed.

We are dismayed both by the accusations themselves and by the details of the Medical Practitioners Tribunal Service report that led to your decision. The tribunal states, for example, that Dr. Squier erred by giving opinions on questions of biomechanics, a field in which she has no formal training. We find this criticism ironic, because the child abuse experts who testify that certain findings prove a child has been shaken also have no formal education in biomechanics. Dr. Squier is probably more familiar with the biomechanical research than most neurosurgeons, pathologists, and other medical experts, in fact, because she worked closely with Chris Van Ee, PhD, a recognized expert in the field, on her 2008 paper “Shaken baby syndrome: The quest for evidence” (Developmental Medicine & Child Neurology 2008, 50:10–14).

The declaration also scolds Dr. Squier unfairly for her citations of the medical research. In one example, she cited the early biomechanical research of Dr. Anne-Christine Duhaime and colleagues (“The shaken baby syndrome: A clinical, pathological, and biomechanical study,” Journal of Neurosurgery 1987 66:409–415) to support her observation that shaking without impact has not been shown to generate sufficient forces to cause brain injury. The panel wrote that Dr. Squier had “completely misinterpreted what Duhaime had actually said,” a conclusion that baffles us. The Duhaime paper was a landmark in the field, because it was the first attempt to test shaking theory scientifically, and the results surprised even the authors, who wrote:

“It was concluded that severe head injuries commonly diagnosed as shaking injuries require impact to occur and that shaking alone in an otherwise normal baby is unlikely to cause the shaken baby syndrome.”

These examples only illustrate the many problems we see with the MPTS report. We encourage you to reconsider the conclusions of the tribunal, and to submit any doubts about Dr. Squier’s opinions to a body that looks at the literature itself, not at other people’s testimony regarding the literature. A consensus of unscientific opinion creates neither science nor medical fact. Even if she were wrong about shaken baby theory, which we don’t think she is, her actions have been taken in good faith and without any attempt to deceive. She has the right to hold an opinion that differs from the majority, especially when supported by valid scientific thought. Without Dr. Squier’s voice, only one side of a legitimate medical debate will reach the courtroom.

Dr. Squier is not alone in her thinking, either. Dr. A. Norman Guthkelch, the first physician to propose in print that shaking can cause subdural hematoma (in the British Medical Journal in 1971), has also defended caretakers accused of infant shaking. He told one of our members in 2012 that he is “horrified” at how his initial proposition is being misrepresented in court, saying, “I am frankly quite disturbed that what I intended as a friendly suggestion for avoiding injury to children has become an excuse for imprisoning innocent parents.” Dr. Squier has received the support of not only Dr. Guthkelch but also a number of other prominent physicians, including Dr. Patrick Barnes at the Louise Packard Children’s Hospital Stanford; Dr. Roland Auer at the University of Saskatchewan College of Medicine, author of Forensic Neuropathology and Associated Neurology (Springer 2005); and Dr. Jan Leestma, author of Forensic Neuropathology (CRC Press, third edition 2014)—all three of whom once accepted the prevailing model of shaken baby syndrome but have since changed their minds.

Dr. Squier is a brilliant physician whose work is internationally known and respected by the scientific community, with the exception of child abuse experts. Her professional writing is founded in science and the scientific method. Her acumen, professionalism, and probity are beyond reproach.

Thank you for considering our experience and perspective. We look forward to your response.

Truly,

The Protecting Innocent Families Board of Directors:

Sue Luttner, President
California, USA

Jennie Aspelin, Vice President
California, USA

Audrey Edmunds, Secretary
Wisconsin, USA

Dr. Bergina Brickhouse, Psychiatrist
Washington, D.C., USA

Dr. Charles Hyman, Retired Clinical Professor of Pediatrics
California, USA

Melissa Staas, Attorney
Illinois, USA

And these other endorsers:

David Ayoub, MD
Clinical Radiologists, S.C., Illinois, USA

Janine Baumgartner
For the Defense of Cindy Vosecek Rosenwinkel, Illinois, USA

Joshua and Brenda Burns, Michigan, USA

Hannah Eckman
Board Member, Torn Family Trust, Michigan, USA

Matt Eckman
Chairman of the Board, Torn Family Trust, Michigan, USA

Katherine Vaughan Ellwood
Marsha Mills Is Innocent, Ohio, USA

Jennifer Fitzgerald, Attorney
Brian Peixoto: Struggle for Innocence, Rhode Island, USA

Mats Hellberg
Board Member, Riksförbundet För Familjers Rättigheter (National Association for Families’ Rights), Sweden

Kimberly Leonard
Executive Director, Pediatric Justice Association, North Carolina, USA

Kristen Maanum, Washington, USA

Aaron Meyer, Attorney, California, USA

Lisa Munger
Advocate, Brian Peixoto: Struggle for Innocence, Massachusetts, USA

Nancy O’Geary-Smith
SBS-Project – Sean O’Geary, Iowa, USA

James Phillips, London, UK

Tonya Sadowsky
Director, The Amanda Truth Project, Ohio, USA

Douglas Smith, MD PhD,
Board Member, Torn Family Trust, Michigan, USA

Katie Steele
Board Member, Torn Family Trust, Michigan, USA

Michelle Weidner
Pediatric Accountability in Central Illinois, Illinois, USA

Protecting Innocent Families Incorporates

seal&babyCloseProtecting Innocent Families (PIF) is pleased to announce that we have incorporated as a 501(c)(3) non-profit organization, with headquarters in Wisconsin.

We are gradually updating the web site to reflect our new organization, which is still coming together. We are also reaching out to other groups that share our goals, hoping to form alliances that help us maximize our effectiveness and reduce the duplication of efforts.

WindowLogoFor a list of the organizations we are networking with, and a link to a page that lists our inaugural board of directors, check the Who We Are section of our site.

Signatures are still coming in on the petition, which we plan to leave on line through the end of 2016. At that time, we will be contacting the signers who said they would be willing to contact their Congressional representatives and talk to the press, so we can get as much publicity as possible for the effort.

In the mean time, please continue to share the petition with people who have experienced the tragedy of misguided abuse accusations. If you are ready to start volunteering with PIF, or if your organization would like to become part of our network, please submit a comment through our Who We Are page.

Raising the Bar

When Protecting Innocent Families launched its petition in the spring of 2015, our goal was to collect the names of 1,000 people who had seen misguided accusations of child abuse tear apart innocent families. The response was overwhelming:  We had collected 1,000 names within the first three weeks, and we were still going strong.

The rate has slowed since then, but the names are still coming in.  We are approaching 3,000 names now, in early October 2015, and we have raised our sights to 5,000.

Meanwhile, we are working on a labor-intensive strategy for approaching Congress with the petition, which we hope will maximize the impact of our numbers. When we’re ready to wrap up and move forward, we will be contacting the people who indicated when signing that they would be willing to contact their elected representatives.

Thank you for your interest.

Progress Report

Thank you to the many people who have signed the petition.

We went public in early March of 2015, with the goal of 1,000 signatures.  We were hoping for more, but we were trying to be realistic.

Now, two months later, we have collected 2,370 names, proving that there are as many people out there as we suspected who understand that there is a problem with false accusations of child abuse.  These numbers will give us even more credibility when we move forward.

Thank you to those who have signed, and to those who have passed the petition on to others. Please keep it going. We are still receiving several new signatures each day and will keep the petition open for at least several more months.