October is Spina Bifida Awareness month! Spina bifida is a birth defect that occurs when the spine and spinal cord membranes do not completely form during pregnancy. Spina bifida affects approximately 1 in every 2,500 babies around the world.
Spina bifida is the most common congenital birth defect that leads to disability. This condition develops within the first 28 days of pregnancy.
Types
The three most common types of spina bifida are Myelomeningocele, Meningocele, and Spina bifida occulta.
Myelomeningocele – This is the most severe form of spina bifida, characterized by significant neurological impairments. With Myelomeningocele, the person’s spinal column is not fully closed, and a sac containing nerves and spinal fluid protrudes from the person’s back. “Myelomeningocele” is the name for this sac.
Meningocele – This type of spina bifida can cause some minor disabilities and there is often little to zero damage to the nerves. In a person with Meningocele, their spinal column opening has a sac of fluid protruding through, but no spinal nerves are exposed.
Spina bifida occulta – In contrast to these more severe/moderate forms of spina bifida, this type is the mildest form, often presenting no symptoms. A person with Spina bifida occulta may have a small gap within their spine, however no spinal fluids or nerves protrude. About 10% of adults have spina bifida occulta, but is not discovered until adulthood or late childhood.
Spina bifida can range from mild to severe. Some individuals may have little to no disability. Other people may be limited in the way they move and/or function. Some people may even be paralyzed or unable to walk or move parts of their body. The severity can depend on the size and location of the opening in the spine, as well as whether or not part of the spinal cord and nerves are affected.
Challenges
Though children with spina bifida face unique health challenges, they also have their own exceptional personalities and beautiful quirks that make them one of a kind. One common challenge is a spike in latex allergy, which affects approximately 68% of children with the defect. Spina bifida does not improve with age or time; individuals can lead a full life while managing the challenges that might come with the condition. Additionally, these individuals are at an increased risk for mental health issues, including anxiety and depression, placing high importance on in-depth comprehensive care that addresses both physical and mental wellbeing.
Approximately 80% of those with spina bifida also experience hydrocephalus, an accumulation of cerebrospinal fluid in the brain. Fortunately, advancements in medical technology have now led to an almost 100% effectiveness in early detection of spina bifida, allowing for early medical intervention and treatment. Understanding and addressing the myriads of challenges associated with spina bifida is essential for improving the quality of life for those living with this condition.
Treatment
Doctors have also found that performing surgery in utero to close the opening in the baby’s back during pregnancy can decrease long-term disabilities associated with spina bifida. The Management of Myelomeningocele Study (MOMS) looked at infants who received this surgery before the first 26 weeks of pregnancy and concluded that closing the opening in the infants back during pregnancy can decrease the risk of death in infancy from spina bifida, reduce the need for shunting by the end of their first year of life, and improve motor function during childhood age. This treatment does not come without risks, including problems with the placenta and possible infection. Families considering this procedure should consult their doctor in regard to possible risks.
Prevention
Almost two-thirds of the 166,000 people living with Spina bifida in the U.S. are adults. Hispanic women have the highest rate of giving birth to infants with spina bifida, indicating there could be a benefit to raising awareness in this specific population. One preventative measure women can take is to consume 400 micrograms of folic acid every day before and during the early stages of pregnancy; this reduces the risk of spina bifida in the developing fetus by 28%.
By raising awareness, we can stay more informed and promote a more supportive community that enhances the quality of life for those who live with spina bifida.
Resources:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6216021/
https://www.cdc.gov/spina-bifida/data/index.html
https://www.spinabifidaassociation.org/awareness-month/facts/
