Bone disease taken for child abuse

Babies suffering from brittle bone disease have been taken into care – because the symptoms resemble those of child abuse.

Eight years ago, Annette Deane took her baby son to hospital because he wasn’t feeding well. Tests showed that he had several broken bones that were now healing. Annette and her partner were suspected of abusing their son, who was taken into foster care. “He was my first child,” said Annette. “He was so precious to me, and the thought that I might lose him – all I could do was cry. Sit and cry.” After four months in care, their son was found to have a broken ankle, and two other fractures. He was diagnosed with brittle bone disease and eventually returned to Annette.Brittle bone disease, or osteogenesis imperfecta, is a rare, incurable, genetic condition, caused by a mutation in collagen proteins in the bones. It can be inherited but can also occur spontaneously. The most obvious symptom is that bones fracture easily. In its severe form it is fatal or severely disabling. But the milder forms of the disease – like Annette’s son’s condition – can be difficult to spot. The problem is that the symptoms can resemble those of babies who have been subjected to violence or rough handling. Professor Nick Bishop of Sheffield Childrens Hospital is considered one of Britain’s leading experts on childhood bone illnesses. He told a BBC Radio 4 documentary that there are probably between 40 and 60 babies born each year with the condition in Britain. Perhaps 10 to 20 of them do not have a family history of bone disease. These cases are at “significant risk” of being misdiagnosed, he said. Time not on our side The symptoms of brittle bone disease become clearer with age, but as Professor Bishop notes, “time is not on our side.” He has seen two cases where abuse was suspected, but the child turned out to have brittle bones and was returned to his family. Dave Endicott, a social worker with 30 years of experience in child protection, says things can go wrong because of an unwillingness to challenge initial medical opinions. “The medical profession is the dominant profession and we look to it to give us guidance on child protection,” he said. “What people do is they get a medical diagnosis that says it’s child abuse and then they go looking for evidence to support that theory or diagnosis.” However, these cases are generally considered rare – especially when set against the 5,000 or so cases of babies under the age of one who arrive at British hospitals with broken bones each year. As most of these babies can’t walk, the vast majority of these 5,000 cases will be considered as non-accidental injury, at least initially, according to Professor Bishop. Keeping an open mind Annie Hudson, a member of the childrens’ committee of the Association of Directors of Social Services, said social workers are aware of the possibility of rare diseases – and are encouraged to keep an open mind during child protection investigations. However, she points out that if a social worker fails to spot and prevent abuse of a young baby, that baby could end up being injured again, or even killed. For Annette Deane, though, the child protection system itself caused harm. She says her son’s time in foster care left him with permanent psychological damage. “They’ve finished their part in it, but for me and my son it’s ongoing. I see something in him every day.” (Source: BBC Health, December 2004)