There is an increased association between the development of sacral agenesis and maternal diabetes. However, most cases arise sporadically and no genetic linkage has been noted. Like all abnormalities of the development of the spine and spinal cord, however, if a parent has one child affected, there is an increased risk of further children being affected with the same condition. The parents would be advised to seek genetic counselling, which can be arranged through their local family doctor. Pre-natal diagnosis is possible but is unusual.
Most cases are only detected following delivery.
Sometimes the presentation may be delayed until the child is older and presents with problems relating to incontinence, urinary tract infections or abnormalities with gait. The group is Contact Group founded in 1987 and the first meeting was held in October 1988 with guest speakers from St Thomas's Hospital. We are a main source of information about rare disorders and are able to assist affected adults as well as children. The CaF Directory Online contains details of many medical conditions and also patient support groups. The information in it is also provided as part of the NHS Direct Online service.