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.
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 They are withdrawn while we are taken into custody and questioned by the police.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.