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Judges must first discuss presence of very common but poorly known inherited diseases before considering parental violence

(Ehlers Danlos Syndrome & Shaken Baby Syndrome)

Published by TaKenUK 23/09/2019

Anyone who has any knowledge of the family court systems and is up to speed on new medical advancement will be aware that these two sectors are heading for a formal conflict.

There has been much in the media about cases where courts are playing a god like status and intervening in the medical and often life and death situations of individuals, where the courts are making determinations in contradiction to the very individuals those decisions are about. These decisions can range from determining an individual’s right to die when they are facing a terminal condition, to parents fighting for the right to have their child tested/treated under a second opinion.  

This is a deeply worrying development and unless you are fortunate to have deep pockets or the influences of those beyond normal reach, you too may fall at the mercy of these very courts.

Besides the above referenced type cases, the courts are now determining the future of minors when rare medical conditions places a child in hospital and medical professionals are wrongly concluding that the child has been purposely injured and begin legal interventions to have the child removed from their parents or carers.  

I use the term ‘rare’ because despite many medical journals and indeed, the internet being filled with just about everything you wish to know about the condition, some medical professionals are still not up to speed on latest published research or are too afraid to oppose child protection protocols because those professionals will personally face intervention should they find themselves on the opposing side of the system.

In recent years, the once considered extremely rare medical condition Ehlers Danlos Syndrome has now become better understood by geneticists and continues to deliver more information in the research area. The Ehlers Danlos Society describes the condition as:

‘’ The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility’’

(do look at their website for more information)

Many of the international geneticists agree that there is a link between bone fragility and other conditions that are often misinterpreted as physical abuse.  There have been many papers written on this subject around the world but especially within the UK, this has become a highly contentious topic. Social care teams do not fully grasp what this condition is and there have been very few who have actually taken the time to fully investigate the condition, as one would expect if you were deciding on the extreme decision to remove a child from their home to be placed with strangers.  

More worryingly, the courts appear to be systematically dismissing child protection cases before them where EDS has been medically determined to be a diagnosis. Having sat in a few of these cases where no concerns were raised about the parents ability to parent or there having been any previous concerns, judges appear to be ignoring the very experts who work in the field and going for the safer option of adoption.  I am not saying that every unexplained injury is as a result of EDS, but what has become increasingly clear is that judges  have little understanding of the condition themselves. There is a phrase often used which is very apt here ‘A little bit of information and understanding can be a dangerous thing in the hands of someone who places themselves of higher importance’.  

Judges seem to either be too afraid to face this issue head on or refer the case to a court that is more appropriate to deal with such cases. I have long held the belief that where ‘rare’ or little understood medical conditions are a main factor of the case; the judge should grant a panel of medical experts to sit with him/her to determine the facts. By having family court judges act as medical expert (unqualified) is not only a conflict but is beyond his/her jurisdiction.  The matter should and must be heard and determined by the very experts who work in the field and thus, aid the court to reach a fully comprehensive judgement.   

In August this year (2019), this very typical scenario came to ground in France.  Due to the complexity and contentious nature of this very condition Ehlers Danlos Syndrome and Child abuse allegations, the French Supreme Court was asked to consider the implications of such cases.

The court was asked to review various documents and evidence from the very experts in the field. You can find some of the documents here or EDS Contribution to Clinical Diagnosis. The conclusion reached was:

‘‘ It is important that the doctor who suspects Silverman Syndrome or the "shaken baby" has made sure to eliminate another cause. The high frequency of Ehlers-Danlos disease requires that it be systematically evoked. Other diseases may be criminalized such as "glass bone disease". The family character highlighted by the discovery of the signs in one of the two parents is a very strong argument. Before considering parental violence, the doctor and the judge must, before a child with lesions evoking this hypothesis, systematically discuss the presence of a very common but very poorly known inherited disease: Ehlers-Danlos.’’

The importance of this judgement is : ‘’ Before considering parental violence, the doctor and the judge must, before a child with lesions evoking this hypothesis, systematically discuss the presence of a very common but very poorly known inherited disease’’

This judgement must be carefully considered by the UK courts before reaching current and future case determinations.  It is just too important not to.

The French Journalist who alerted me to this case, Florence Bellone, has kindly written an article for us to share.  

When judges favour concrete expertise over social dogma

There are in France more and more copycat situations of broken families by social services and family courts. French family courts don’t produce gagging orders but being closed to public (and press) eyes, they are intimidating and sometimes destroying parents who should never find themselves front of a judge.

At least the fact that forced adoption is not legal means that there is no such race as in the UK to severe links between babies and suspected parents. Parents who can afford the legal fight, who can understand it thanks to their education, face courts and are often reunited with their children although through damaging delays. Vulnerable parents often need a fair dose of help to get out of the nightmare.

Adikia is a French organisation fighting the superficial medical diagnostic which declares almost any injury sustained by a baby or toddler the fruit of parental abuse. His founder is a neuroscientist and Adikia is supported by a handful of scientists and lawyers. What Adikia reports on its website is that In March, four scientists from Belgium, France and United States - two of them being court experts- published a piece about the Ehlers-Danlos Syndrome in the French law paper, “La Gazette du Palais”. The piece’s conclusion is that no abuse should be suspected before all tests to detect this illness are done. 

Many French experts work like sheep grazing money. In E&A services, expert’s guidelines kind of force doctors into hasty conclusions. Parents, not medical specialists supposed to help children, have to engage in researching what truly cause fractures, hematomas or other injuries to their baby if they want him or her back home. But it seems that experts with a conscience and a real desire for scientific truth can speak out without fear of being brought to court like it happened to Dr Waney Squier in the UK. At least I hope so.

This last month of August, a father accused of infanticide was cleared by judges who rejected and expertise based on the Heatlh High Autority recommendations linking sub-dural hematomas and SBS. The court was rather convinced by Prof. Marescaux (neurologist) and Prof. Echenne (neuropediatric) evidence showing that the deceased child had not been abused. Maître Etrillard, a well known lawyer among victimised parents, made the case.

Of course, with a murder charge, the father was facing the Court of Assizes, our criminal court, where highest standards of justice are expected. The Court of Assizes is not supposed to be content with recommendations as hard evidence and we can only hope for family courts to give up the comfort of “principle of precaution” to become as dignified as criminal courts.


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