Spina bifida is the one of the most common birth defects in the United States, affecting approximately one in every two thousand live births.
A condition affecting the backbone and spinal cord, spina bifida is the most common birth defect in the category of neural tube defects (NTD). The neural tube is the embryonic structure that will eventually become the baby’s brain and spinal cord, as well as the tissues that surround them.
While, like most special needs kids, children with spina bifida face a series of challenges growing up, the good news is that with proper treatment they can go on to live full lives.
What are the Causes of Spina Bifida?
Unfortunately, the majority of spina bifida cases have no known cause. In fact, in up to 95% of spina bifida cases are isolated birth defects – meaning they do not have a genetic link. However, babies whose mothers had high fevers during pregnancy – particularly during the first trimester (hyperthermia) – do seem to have a greater chance of giving birth to a child with spina bifida.
In addition, there may be certain environmental risk factors that put a woman at risk of having a baby with spina bifida, such as folic acid deficiency. Women with medical conditions such as diabetes and obesity also seem to be at increased risk. Researchers are also looking to the effects of valproic acid – a medication taken to decrease the frequency of seizures caused by epilepsy. Ethnicity could also be a factor, as spina bifida is more common among Hispanics and whites of European descent.
Spina Bifida Diagnosis
During pregnancy, women undergo a series of prenatal tests to detect birth defects. Between 16 and 18 weeks gestation, most pregnant women will undergo a maternal serum alpha-fetoprotein (AFP) test. The levels of AFP in the mother’s blood are then tested. If high levels are found in two subsequent tests, an ultrasound will then normally be performed to determine why.
If your ultrasound is normal but you have high AFP levels, your doctor may request an amniocentesis (in which a needle inserted in the uterus collects fluid and tests for AFP) can also be used to detect the disease, although this does carry with it a slight increased risk of miscarriage (about 1 in every 200 pregnant women miscarry after amniocentesis).
Early detection of spina bifida is crucial because it allows doctors to provide pregnant women with the support and information they need. At the same time, future surgeries can also be planned before the birth.
Types of Spina Bifida
There are three types of spina bifida, ranging from mild to severe. A patient’s treatment and outcome will depend greatly on which type of spina bifida she is diagnosed with.
- Spina Bifida Occulta: Characterized as an opening in one or more vertebrae of the spinal column, this is also the least severe type of the condition. Those diagnosed with this condition often have no apparent damage to the spinal cord. Most children born with this form of Spina Bifida don’t have serious health problems and go on to lead normal lives.
- Meningocele: This rare form of spina bifida leaves the spinal cord intact, but the meninges (sac) which protects it, pushed out through the opening in the vertebrae. The good news is that the meninges can be replaced with minimal damage to the spinal cord.
- Myelomeningocele: The most serious form of spina bifida, myelomeningocele is the condition most people associate with spina bifida. Those with this condition have a spinal cord that protrudes through the back. Seventy to ninety per cent of babies born with myelomeningocele have hydrocephalus – a large amount of fluid on the brain. In such case, surgery is required, and a shunt is inserted to drain fluid. Children with myelomeningocele often experience learning disabilities as well as problems with mobility and in some cases, paralysis.
What is Life Like for Children with Spina Bifida?
Unfortunately, there are a variety of social problems associated with spina bifida – particularly for children diagnosed with a more severe type. Paralysis is common in extreme cases of the disease, so mobility may be restricted. Depression is also relatively common, as are learning disabilities (particularly with reading and math).
Many children also have attention deficit hyperactivity disorders (ADHD), as well as bladder and bowel control problems.
In the past, babies born with spina bifida died shortly after birth. Today, early surgery is usually recommended and is often performed within the first forty-eight hours of birth.
Surgery increases the survival rate exponentially, and many spina bifida patients live well into adulthood. Hwever, children with spina bifida typically require several operations during their childhood to correct defects, particularly in the hips, feet and spine.
A cesarean section may also be recommended to reduce the degree of damage to the baby’s exposed nerves. Having a planned cesarean also allows doctors to prepare themselves for surgery after birth.
Taking folic acid both before and during pregnancy is a must in preventing many types of birth defects, including spina bifida. More specifically, a daily dose of 0.4 milligrams of folic acid is recommended, and should ideally be taken for at least three months before getting pregnant as well as throughout the first trimester.
In terms of your daily diet, it is a good idea to increase your intake of foods rich in folic acid such as eggs, dark leafy vegetables and orange juice. Multivitamins can also be used to ensure that the recommended daily dose is reached. Taking the proper amount of folic acid while pregnant can prevent up to 70% of neural tube defects, including spina bifida.
To learn about activities and games that can help promote your chidl's development, as well as information on therapy and schooling options for children with spina bifida, check out our spina bifida activities section.