Understanding Spina Bifida: Why October is Spina Bifida Awareness Month
Spina Bifida is a complex condition that affects thousands of people worldwide. It is a neural tube defect that occurs when the spinal cord and its protective covering do not develop properly during fetal development. The condition is known to cause a range of physical and neurological symptoms, which can significantly impact the quality of life of affected persons. October is Spina Bifida Awareness Month, a time when we focus on educating the public about the condition and how it affects people. This article aims to provide an overview of Spina Bifida, including its causes, symptoms, treatments, and prevention methods.
History of Spina Bifida Awareness Month
Spinal defects have been recorded throughout history, with depictions found in statues and artifacts from ancient civilizations. However, it wasn't until the Classical Period of Hippocrates that descriptive writings about these defects emerged. The first known description of spina bifida was by Nicolas Tulp in 1653, who proposed the term and described it as a vertebral anomaly. Surgeons attempted to treat spina bifida from the 1600s to the mid-1800s, but without success. In the mid-1800s, Dr. James Morton's technique of injecting an iodine and glycerine solution into the sac proved successful. In 1973, the Spina Bifida Association of America was formed, providing information and support to families affected by spina bifida. Today, efforts to better treat this condition continue through events and fundraisers held during the official month of October.
What is Spina Bifida?
Spina Bifida is a birth defect that affects the spinal cord and its protective covering. It occurs when the neural tube, which forms the brain and spinal cord in the developing fetus, fails to close completely during the first month of pregnancy. This results in a gap or opening in the spine, through which the spinal cord and its protective covering protrude. The severity of the condition varies, with some people experiencing mild symptoms, while others have severe disabilities.
Spina bifida is the most common, permanently disabling birth defect. In 2005, the CDC approximated that about 18 cases of myelomeningocele per 100,000 live births occur in the United States. The Spina Bifida Association conservatively estimates that there are 70,000 people living in the United States with the condition. The prevalence appears to have decreased in recent years due in part to preventative measures followed by expectant mothers prior to and during pregnancy as well as prenatal testing. The risk of having a second affected child increases to 2-3% and 10% for a third child.
Although scientists believe that genetic and environmental factors may act together to cause spina bifida, 95% of babies with spina bifida are born to parents with no family history. Women with certain chronic health problems, including diabetes and seizure disorders (treated with certain anticonvulsant medications), have an increased risk (approximately 1/100) of having a baby with spina bifida.
Types of Spina Bifida
There are three main types of Spina Bifida, each with its own set of symptoms and severity levels.
Myelomeningocele
When people talk about spina bifida, most often they are referring to myelomeningocele. Myelomeningocele is the most serious type of spina bifida. With this condition, a sac of fluid comes through an opening in the baby’s back. Part of the spinal cord and nerves are in this sac and are damaged. This type of spina bifida causes moderate to severe disabilities, such as problems affecting how the person goes to the bathroom, loss of feeling in the person’s legs or feet, and not being able to move the legs.
Meningocele
Another type of spina bifida is meningocele. With meningocele a sac of fluid comes through an opening in the baby’s back. But, the spinal cord is not in this sac. There is usually little or no nerve damage. This type of spina bifida can cause minor disabilities.
Spina Bifida Occulta
Spina bifida occulta is the mildest type of spina bifida. It is sometimes called “hidden” spina bifida. With it, there is a small gap in the spine, but no opening or sac on the back. The spinal cord and the nerves usually are normal. Many times, spina bifida occulta is not discovered until late childhood or adulthood. This type of spina bifida usually does not cause any disabilities.
Causes of Spina Bifida
The exact cause of Spina Bifida is unknown, but research suggests that both genetic and environmental factors may play a role (which also still needs to be studied further). However, we do know that there are ways for women to reduce the risk of having a baby with spina bifida both before and during her pregnancy.
If you are pregnant or could get pregnant, use the following tips to help prevent your baby from having spina bifida:
- Take 400 micrograms (mcg) of folic acid every day. If you have already had a pregnancy affected by spina bifida, you may need to take a higher dose of folic acid before pregnancy and during early pregnancy. Talk to your doctor to discuss what’s best for you.
- Talk to your doctor or pharmacist about any prescription and over-the-counter drugs, vitamins, and dietary or herbal supplements you are taking. Learn about medication and pregnancy.
- If you have a medical condition―such as diabetes or obesity―be sure it is under control before you become pregnant.
- Avoid overheating your body, as might happen if you use a hot tub or sauna.
- Treat any fever you have right away with Tylenol® (or store brand acetaminophen).
Spina bifida happens in the first few weeks of pregnancy, often before a woman knows she’s pregnant. Although folic acid is not a guarantee that a woman will have a healthy pregnancy, taking folic acid can help reduce a woman’s risk of having a pregnancy affected by spina bifida. Because half of all pregnancies in the United States are unplanned, it is important that all women who can become pregnant take 400 mcg of folic acid daily.
Diagnosis of Spina Bifida
Spina bifida can be diagnosed during pregnancy or after the baby is born. Spina bifida occulta might not be diagnosed until late childhood or adulthood, or might never be diagnosed.
During Pregnancy
During pregnancy there are screening tests (prenatal tests) to check for spina bifida and other birth defects. Talk with your doctor about any questions or concerns you have about this prenatal testing.
- AFP – AFP stands for alpha-fetoprotein (sounds like: al-fa–fee-toe-pro-teen), a protein the unborn baby produces. This is a simple blood test that measures how much AFP has passed into the mother’s bloodstream from the baby. A high level of AFP might mean that the baby has spina bifida. An AFP test might be part of a test called the “triple screen” that looks for neural tube defects and other issues.
- Ultrasound – An ultrasound is a type of picture of the baby. In some cases, the doctor can see if the baby has spina bifida or find other reasons that there might be a high level of AFP. Frequently, spina bifida can be seen with this test.
- Amniocentesis (sounds like: am-knee-oh-sin-te-sus; hear how “amniocentesis” sounds) – For this test, the doctor takes a small sample of the amniotic fluid surrounding the baby in the womb. Higher than average levels of AFP in the fluid might mean that the baby has spina bifida.
After the Baby Is Born
In some cases, spina bifida might not be diagnosed until after the baby is born.
Sometimes there is a hairy patch of skin or a dimple on the baby’s back that is first seen after the baby is born. A doctor can use an image scan, such as an X-ray, MRI, or CT, to get a clearer view of the baby’s spine and the bones in the back.
Sometimes spina bifida is not diagnosed until after the baby is born because the mother did not receive prenatal care or an ultrasound did not show clear pictures of the affected part of the spine.
Treatment of Spina Bifida
There is no cure for Spina Bifida, but there are various treatments available to manage the symptoms and improve the quality of life of affected individuals. Not all people born with spina bifida have the same needs, so treatment will be different for each person. Some people have problems that are more serious than others. People with myelomeningocele and meningocele will need more treatments than people with spina bifida occulta.
- Surgery: Surgery is often necessary to close the opening in the spine and prevent further damage to the spinal cord. In some cases, surgery can also correct other associated conditions, such as hydrocephalus.
- Physical therapy: Physical therapy can help improve muscle strength, mobility, and coordination.
- Medications: Medications can be used to manage pain, muscle spasms, and other associated conditions.
- Assistive devices: Assistive devices such as braces, crutches, and wheelchairs may be needed to help with mobility.
FAQs:
Can Spina Bifida be detected during pregnancy?
Yes, Spina Bifida can be detected during pregnancy through ultrasound or other prenatal tests.
Can Spina Bifida be cured?
There is no cure for Spina Bifida, but there are various treatments available to manage the symptoms and improve the quality of life of affected individuals.
Is Spina Bifida hereditary?
Spina Bifida can be inherited from parents who carry a specific gene mutation, but in most cases, the condition occurs spontaneously without any family history.
Observing Spina Bifida Awareness Month
Observing Spina Bifida Awareness Month is a great opportunity to raise awareness, provide support, and educate others about this condition. Here are some ways to observe Spina Bifida Awareness Month:
- Organize fundraising events: Plan and host fundraising events such as charity walks, runs, or bike rides to raise funds for research, treatment, and support services for individuals with spina bifida.
- Share stories: Share personal stories of individuals living with spina bifida or stories of their families to raise awareness and promote understanding. These stories can be shared through social media, blogs, or community events.
- Host educational sessions: Organize seminars, workshops, or webinars to educate the public, healthcare professionals, and schools about spina bifida. Invite experts to speak about the condition, its challenges, and available support resources.
- Social media campaigns: Launch social media campaigns using hashtags related to Spina Bifida Awareness Month. Encourage people to share facts, personal experiences, and messages of support to spread awareness and engage a wider audience.
- Volunteer and support organizations: Offer your time and support to local organizations that focus on spina bifida. Volunteer at their events, participate in their programs, or donate to their cause.
- Create informational materials: Develop brochures, posters, or infographics that provide essential information about spina bifida, its causes, symptoms, treatments, and available support services. Distribute these materials in healthcare facilities, schools, and community centers.
- Advocate for policy changes: Work with local policymakers to advocate for policies that improve access to healthcare, education, and support services for individuals with spina bifida. Attend public meetings, write letters, or participate in awareness campaigns to create positive change.
- Organize support groups: Start or join a support group for individuals and families affected by spina bifida. These groups provide a safe space for sharing experiences, seeking advice, and finding emotional support.
- Collaborate with healthcare professionals: Reach out to healthcare professionals, such as doctors, nurses, and therapists, to create partnerships and enhance the quality of care for individuals with spina bifida. Offer to share information or provide resources that can aid in their practice.
Remember, Spina Bifida Awareness Month is an opportunity to make a meaningful impact and improve the lives of individuals living with this condition. By raising awareness and supporting the cause, we can promote inclusivity and better understanding in our communities.
Conclusion
Spina Bifida is a complex condition that affects thousands of people worldwide. October is Spina Bifida Awareness Month, a time when we focus on educating the public about the condition and how it affects people. While there is no cure for Spina Bifida, there are various treatments available to manage the symptoms and improve the quality of life of affected individuals. Pregnant women can also take several measures to reduce the risk of their baby developing the condition. By raising awareness and understanding of Spina Bifida, we can help support those affected by the condition and work towards preventing it in the future.
Sources:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4898641/
https://www.spinabifidaassociation.org/
https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Spina-Bifida