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Neural Tube Defects

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The goals with treatment are to prevent as many cases of neural tube defects as possible and to minimize the symptoms and treat the complications of those affected.

Adequate folate/folic acid is the primary prevention tool. Recent evidence suggests that folic acid supplementation could reduce the incidence of NTDs by up to 70%, but the protection it provides must be in place at the time of conception. It is recommended that all women of childbearing age get at least 400 micrograms of folic acid/folate a day. Since folic acid is a water-soluble vitamin, it must be constantly replenished. Folic acid can be found in dark green vegetables and some fruit. Most grain products in the U.S. are good sources because they have been fortified with added folic acid. Women who have spina bifida, or who already have a child with spina bifida, or who are otherwise considered at an increased risk of having a baby with an NTD may be given a prescription for about 10 times the recommended dose for several months before becoming pregnant. This higher dose is not recommended for the general population.

There is no cure for NTDs, and any nerve damage or loss in function is permanent. Monitoring is initiated as soon as a neural tube defect is detected. Those with a mild NTD may not require treatment, but many of those affected require one or more surgical interventions with needs that begin at birth and change over time. New options are constantly emerging and parents should work with their doctors to determine which treatments are right for their child.

Usually a baby born with spina bifida requires surgery as soon as possible after birth to close the spinal defect and protect exposed nerves from further damage. A recent “MOMS” study sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development has shown promising results for performing surgery on fetuses with myelomeningocele between 19 and 26 weeks' gestation. Covering the neural tube defect with layers of the fetus's tissues to close and protect it resulted in better motor function at 30 months age in those treated and in a reduced need for shunt placement. There were, however, also some increased risks to the mother and baby. The mothers required follow-up monitoring and cesarean deliveries, and many of the babies were born prematurely. These specialized surgeries are being performed in a few centers, and research into the use of this type of surgery to address NTDs is continuing.

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