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  1. ITV Report

Baby removed from parents over 'abuse' is found to have rare bruising condition

The baby was diagnosed with a rare condition (stock image) Credit: PA

A baby who was removed from her parents when they were accused of abusing her has a rare condition which causes "easy bruising".

Social services bosses had been attempting to have little Effie put into council care after she collapsed when about five months old in August 2016.

Her father Craig Stillwell was arrested on suspicion of causing grievous bodily harm as officials believed Effie had been shaken.

Effie's mother Carla Andrew and Mr Stillwell, both in their early twenties, lived through months of "unimaginable horror", Judge Karen Venables said during a family court hearing in Milton Keynes, Buckinghamshire.

Experts have now established that Effie suffers from Ehlers-Danlos syndrome type IV (EDS IV) - a condition characterised by "thin and translucent skin, easy bruising, vascular and arterial rupture".

Detail of the case has emerged in a ruling by Judge Venables, who named Effie and her parents after they asked her to deliver an "open judgement" to encourage discussion of EDS IV.

The judge also revealed it was bosses at Buckinghamshire County Council who had launched family court proceedings.

Effie was the first child diagnosed with EDS IV to be subject of a family court "forensic inquiry", the judge added.

She said Effie's mother had also been diagnosed as suffering from EDS.

Vascular Ehlers-Danlos Syndrome:

  • What is EDS IV? Vascular Ehlers-Danlos Syndrome is characterised by thin and translucent skin, easy bruising, and arterial, intestinal, and/or uterine fragility.
  • How is EDS IV diagnosed? A DNA test can give a 95% accurate result.
  • How can EDS IV be treated? Sufferers are advised to seek immediate medical help which will vary case by case, but could include arterial surgery or treatment to bowel rupture.
  • How can EDS IV be managed? People with the syndrome are advised to avoid heavy lifting, weight training, and any activity that could result in a trauma.
  • Is EDS IV hereditary? Yes, and 60% of diagnoses prior to the age of 18 are identified because of family history.
  • How many people have EDS IV? There are no official figures but around 1,500 cases have been identified in the US. It is thought that many cases do not get diagnosed.