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Spina Bifida Dysraphisms

Spina Bifida is a congenital malformation of the spinal cord responsible for a deficit of innervation of variable extent depending on the location of the malformation.

This deficit is irreversible, almost always affecting the pelvic organs leading to urinary and faecal incontinence and to a greater or lesser extent the lower limbs, many subjects being in a situation of complete paraplegia who can only move around in a wheelchair. It is often associated with malformations of the central nervous system responsible in particular for hydrocephalus.

Affected patients must be monitored, helped by the medical and surgical management of their various disabilities from birth and throughout their lives.

the CHU Caen Normandie has all the human and material resources adapted to the care of patients with Spina Bifida, whether adults or children. It is officially recognized as a skills center for this pathology .

  • Spina Bifida / Dysraphism

    Disease

    Spina bifida or spinal dysraphism is a pathology related to an anomaly in the development of the nervous system, occurring at the early stage of pregnancy. The neural tube does not close properly.

    The exact cause of spina bifida is not known. Vitamin B9 taken in sufficient quantity reduces the risk. Taking certain medications during pregnancy can increase it.

    We distinguish :

    • open dysraphism, or spina bifida aperta (myelocele or myelomeningocele) ,
    • occult (closed) dysraphism or spina bifida occulta.
    Open dysraphism: the most common

    The attack is multiple, variable according to the individuals.

    Most often the main anomaly is located in the lower back, in the lumbar or sacral region.

    The part of the nervous system which controls the lower limbs, the urinary tract, the lower intestine and the functioning of the sexual organs is affected. This can cause paralysis and/or sensory disturbances in these parts of the body, to varying degrees. As this pathology occurs even before birth, it will also disrupt bone growth and lead to orthopedic deformities and sometimes pain.

    There is therefore possibly an impact on walking abilities, on the possibilities of urinating or retaining urine, on digestive functions (constipation and/or incontinence), on sexuality.

    Urinary tract infections are common and skin complications can occur due to the skin sensitivity disorder.

    The nervous system located above the spinal cord can also be affected by the disease. This can cause other disorders that can affect the upper limbs, learning abilities and cognitive functions, balance, sight….

    Over time, weight problems or other metabolic disorders can arise that are important to prevent.

    Psychological repercussions are frequent.

    Closed dysraphism

    Neurological involvement is more limited and does not extend to the upper part of the body

    The important points

    Advances in diagnosis (diagnosis before birth by ultrasound and alpha-fetoprotein assay), the development of early neural tube closure surgery, sometimes possible even in utero, improved urological, digestive and neuro-orthopedic monitoring have improved the longevity and quality of life of people with dysraphism.

    Taking folic acid during any pregnancy from two months before conception, and during the first two months, limits the risk of onset of the disease. If you take certain antiepileptic drugs, seek medical advice , and sometimes modify the treatment during pregnancy, in order to limit the risk of spina bifida.

    Spinal dysraphism (spina bifida) is irreversible .

    Its impact varies from one individual to another. Each situation is unique. This pathology requires early medical and surgical treatment .

    Medical follow-up and multidisciplinary support are essential , and this throughout life .