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

This deficit is irreversible, almost always affecting the pelvic organs and leading to urinary and fecal incontinence, and to varying degrees, lower limb incontinence. Many individuals are completely paraplegic and can only move using a wheelchair. It is often associated with malformations of the central nervous system, particularly hydrocephalus.

Patients with these conditions must be monitored and supported by medical and surgical management of their various disabilities from birth and throughout their lives.

The Caen Normandy University Hospital has all the necessary human and material resources to care for patients with Spina Bifida, whether adults or children. It is officially recognized as a center of expertise for this condition.

Team

Spina Bifida / Dysraphism

The disease

Spina bifida, or spinal dysraphism, is a condition involving a developmental anomaly of the nervous system that occurs early in pregnancy. The neural tube does not close properly.

The exact cause of spina bifida is unknown. Sufficient vitamin B9 intake reduces the risk. Taking certain medications during pregnancy can increase the risk.

We can distinguish:

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

The impact is multifaceted and varies from person to person.

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

The part of the nervous system that controls the lower limbs, the urinary system, 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. Because this condition occurs even before birth, it will also disrupt bone growth and lead to orthopedic deformities and sometimes pain.

Therefore, there is a possible impact on walking ability, on the ability to urinate or to hold urine, on digestive functions (constipation and/or incontinence), and on sexuality.

Urinary tract infections are common and skin complications can occur due to impaired skin sensation.

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

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

Psychological repercussions are common.

Closed dysraphism

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

Key points

Advances in diagnosis (prenatal diagnosis by ultrasound and alpha-fetoprotein testing), the development of early neural tube closure surgery, sometimes even possible in utero, and improvements in urological, digestive, and neuro-orthopedic follow-up have led to improvements in the longevity and quality of life of people with dysraphism.

Taking folic acid during pregnancy, starting two months before conception and continuing throughout the first two months, reduces the risk of developing spina bifida. If taking certain anti-epileptic medications , medical advice should be sought , and the treatment may need to be adjusted during pregnancy to minimize the risk of developing the condition

Spinal dysraphism (spina bifida) is irreversible.

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

Medical monitoring and multidisciplinary support are essential , and this throughout life .