Spina Bifida, a type of neural tube defect (NTD), is a condition that affects the spine and is typically apparent at birth. It occurs when the neural tube, which forms the backbone that protects the spinal cord, fails to close completely during early fetal development. This can result in damage to the spinal cord and nerves, leading to physical and intellectual disabilities that can range from mild to severe, depending on the size and location of the opening in the spine and whether the spinal cord and nerves are affected.
The exact cause of Spina Bifida is not known, but it is believed to be a result of a complex mix of genetic and environmental factors present early in pregnancy, usually by the fourth week. It is important to note that Spina Bifida is not caused by the actions of parents, and no birth defect can be prevented, only the risks can be reduced.
People with Spina Bifida may encounter various medical issues throughout their lives. Immediate medical care is required after birth to close the Spina Bifida lesions within 72 hours to prevent infection and further damage to the spinal cord. Hydrocephalus, which is an excessive amount of spinal fluid collecting in the brain, occurs in approximately 80% of people with Spina Bifida and may require surgical placement of a ventriculoperitoneal (VP) shunt to manage the condition. Neurogenic bowel and bladder issues may also arise due to nerve damage, but treatments have been developed to manage these issues.
The severity of Spina Bifida and its impact on an individual’s life can vary greatly depending on the location and level of the spinal lesion. While some individuals may have mobility issues and learning difficulties, others may have normal IQ scores and lead fulfilling lives with successful careers and families. It is important to work closely with specialists, such as pediatric neurosurgeons, SB clinics, and maternal-fetal specialists, to gather information and make informed choices about the best course of action for the baby and family, whether it be prenatal or postnatal surgery, adoption, or termination.
For pregnancies diagnosed earlier than 25 weeks gestation, in-utero fetal surgery may be an option to close the baby’s back before birth, but it is not suitable for all women and comes with potential risks and benefits. Babies with Spina Bifida should be delivered at a specialized medical center that can provide specialized care during and after birth, including monitoring in the neonatal intensive care unit. With advancements in medical care and changing cultural attitudes, outcomes for individuals with Spina Bifida have improved over the years, and it is important to remember that Spina Bifida is just one aspect of a person’s life and does not define their capabilities or potential.
Source: https://www.spinabifidaassociation.org/resource/