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Myelodysplasia (Spina Bifida) Clinic
Myelodysplasia Clinic
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Home Clinical Services Myelodysplasia Clinic About Myelodysplasia
Flower About Myelodysplasia
Spina bifida is a complex birth defect which affects the development of the spinal cord and the spine, as well as the developing brain. It is relatively common (In the United States, 1 in every 1000-2000 babies is born with the defect) and varies widely in severity.
  • Spina bifida occulta is the mildest form, in which there is no overt sign of a malformation and the skin is normal. Usually, there is involvement of one or a few vertebrae and there may be associated "tethering of the spinal cord." It may not be diagnosed at birth and frequently causes no symptoms, although those can develop later on in life and may require surgery to release the tethered spinal cord or repair orthopedic defects.

  • Meningocele: The spinal canal does not close properly and the meninges (the membranes that enclose the spinal cord) have formed a sac, but the spinal cord is not affected. Most children with this condition have normal function in their legs. Their spinal cords are frequently tethered, however, and almost all of these children will require surgery to repair the sac and to release the tethering.

  • Myelomeningocele: the spinal canal fails to close around the abnormal spinal cord, so that the nerves and spinal cord are exposed through an opening in the spinal column, the meninges and the skin. There is no or incomplete skin formation over the area. The spinal cord has not developed normally and children born with this condition are frequently paralyzed or partially paralyzed in the legs and are usually incontinent.
To prevent infection and additional damage to the spinal cord, it is important to surgically close the opening shortly after birth (usually within 24 hours). However, this surgery only protects the nerves from further damage -- it cannot restore loss of sensation or movement that has already occurred. With increased use of prenatal testing and imaging, many cases of spina bifida are now recognized before birth. A major multi-center study (MOMS- Management of Myelomeningocele Study) is underway to determine whether prenatal surgery to close the defect confers any advantage.

While most patients in the myelodysplasia program are of normal intelligence, they face many other challenges, including urinary and orthopedic struggles as well as neurological problems and learning disabilities.

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