Investigate the relationship between Ehlers-Danlos Syndrome and fractures in infancy!

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Hundreds of children are removed from their families every year by Children's Services and the Family Courts when a young infant is found to have fractures and bruising. The paediatricians fail to include connective tissue disorders in their differential diagnosis, meaning that the parents are accused of abuse and care proceedings are initiated.

We must highlight that we understand why child protection investigations need to take place and we value their role to protect vulnerable children. However, the professionals can have tunnel vision, and do not consider conditions that mimi child-abuse.

Many of these infants have a condition called Ehlers Danlos Syndrome, which causes blood vessel fragility and many other symptoms due to a defect in the body's collagen.

Many UK medical Court experts will disagree that Ehlers Danlos syndrome or Hypermobility predisposes a child to fractures. There is a lot of literature and research being undertaken that shows the link.

U.S Endocrinologist Dr Michael Holick has written a groundbreaking paper on the links between EDS and fractures. It is accepted by many EDS experts and medical professionals that connective tissue disorders including EDS cause bone fragility.

Certain cases in the family Courts such as this one: http://www.familylawweek.co.uk/site.aspx?i=ed113379 will have Judges that recognise a lot is left to be learned about EDS, and he made no findings of non-accidental injury against the parents despite multiple fractures and subdural bleeding when the babies are diagnosed with EDS.

The parents had skilled representation that were experts in EDS cases, notably, Paul Storey QC, who has gone before the House of Lords to talk about the widespread crisis that is the accusations of child abuse that parents receive when it is in fact, EDS.

Not every parent is lucky enough to have knowledgeable representation like Paul Storey QC who will fight their corner. Not every parent is lucky to have a Judge that accepts the Family Court principle of today's medical certainty not always being tomorrows.

This petition is to ask for a medical and widespread study to be funded by the UK government into the relationship between Ehlers-Danlos syndrome and fractures in infancy.

It is also for the findings of the study to be communicated to our hospitals, and for comprehensive training on diagnosing Ehlers-Danlos Syndrome when they suspect child abuse.

This petition is concerned mainly with fractures and Ehlers-Danlos, however, many other  alleged injuries or forms of abuse in children can be caused or triggered by EDS. There is much research left to be desired about the following and their relationship with EDS:

Subdural hemorrhages

Subconjunctival hemorrhages

Retinal hemorrhages

Shaken Baby Syndrome (the controversial triad)

Almost any type of hemorrhage!

Bowel issues

Dislocations

FII and Munchausens

I do not know how many loving parents have lost their babies due to this gap in the medical knowledge. I do not know how many children have been forcibly adopted when they had a medical condition all along. Maybe that is why the medico-legal community is so reluctant to accept a link between EDS and fractures.

 

 



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