West Michigan Spina Bifida Organization

What is spina bifida? Are there different types?

Spina Bifida is a neural tube defect that occurs when the spinal structure fails to form and close properly. This occurs in utero during the first four weeks after conception, before most women even know they’re pregnant. Spina Bifida happens in about 1 in 1,000 live births in the United States. There are 3 main types of Spina Bifida: Occulta, Meningocele, and Myelomeningocele. Occulta and Meningocele are a less severe form of Spina Bifida. People with these types of Spina Bifida may have minor disabilities or no problems at all. Myelomeningocele is the most common and severe form of Spina Bifida. This occurs when the meninges of the spine and spinal nerves actually come through the opening in the spine. This form of Spina Bifida can cause the most nerve damage resulting in disabilities.

We were given the prenatal diagnosis of Spina Bifida. How did this happen?

First of all it’s important not to blame yourself, birth defects can occur in any family. In fact, 95% of neural tube defects like Spina Bifida occur in pregnancies where there is no family history of it. Unfortunately there is no known cause for Spina Bifida. However, studies show that taking folic acid prior to your pregnancy and throughout the first weeks can reduce the risk of Spina Bifida. At the WMSBO we understand that receiving the prenatal diagnosis of Spina Bifida can be extremely difficult. If you’d like to connect with others going through similar circumstances check out our support group for new moms and pregnant moms!

What is the treatment for Spina Bifida?

For most, Spina Bifida is first detected during a prenatal ultrasound, typically around 20 weeks gestation. Traditionally surgery is performed shortly after birth to close the opening in the spine, remove cystic areas, and reduce the risk of nerve damage and infection. Recently, however, the option of having the surgery performed in utero is available. Current studies (http://fetus.ucsfmedicalcenter.org/spina_bifida/moms_trial.asp) show that an early surgical intervention reduces the need for a shunt and increases the likelihood that a child will walk unassisted. There is no cure for Spina Bifida.

What are the complications associated with Spina Bifida/ Myelomeningocele?

Spina Bifida can affect people in many different ways. There are no two people alike and there is a large spectrum of outcomes and abilities. Sometimes when people discuss Spina Bifida they refer to a “level. ” This is where the lesion, or the opening, occurred on the spine. The lesion can occur anywhere on the spine including the sacral area (the lowest area of the spine near the tailbone), the lumbar area (lower back section), and the thoracic are (upper back), and sometimes higher. Often the location of the lesion determines your physical abilities. People with lower level lesions typically have more leg function than people with higher lesions. It’s important to keep in mind that this is a generalization. Spina Bifida can be a complex disability and can affect people in the following ways:

Physically/Orthopedically- Since Spina Bifida begins with a lesion in the spine it causes various degrees of nerve damage which typically affects the lower extremities. As a result, people with Spina Bifida usually need some type of assistance to walk or get around. Some use wheelchairs, walkers, or crutches, and others may only need customized leg or ankle braces, or none at all.

Neurological - Many people with Spina Bifida also have a condition called hydrocephalus, or a build-up of cerebrospinal fluid in the brain. About 80% of people with Spina Bifida have hydrocephalus that needs to be treated. Typically the solution is a shunt, a device which is surgically installed in the ventricles of the brain which drains the fluid into the abdomen. In most situations, when a baby with Spina Bifida is born they immediately monitor for hydrocephalus and if a shunt is needed it’s usually done within the first few weeks after birth.

Urological - Many people with Spina Bifida have what’s called a neurogenic bladder. This condition can make it challenging to be continent however there are lots of different methods, surgeries, and programs to achieve continence while keeping your bladder and bowels healthy. People with Spina Bifida usually see a Urologist throughout their lifetime to insure that their bladder and kidneys are as healthy as possible. Urological concerns for many are the most challenging aspect of Spina Bifida. Yet, many children and adults with neurogenic bladders successfully achieve continence.

Orthopedic, neurological, and urological concerns are often the major medical challenges associated with spina bifida. It’s important to keep in mind that Spina Bifida can affect people in many different ways. Some live their life with hardly any of the above problems, and some endure a long list of challenges. Thankfully new research is always developing and more than ever there are more solutions, options, better care, and resources for people living with Spina Bifida.

What are people with Spina Bifida like?

Spina Bifida is a medical diagnosis, it does not define someone. If you’re a new parent, your baby born with Spina Bifida will probably be more “normal” than you think. He/she will be a cute, cuddly baby who needs to be held and loved. Many kids with Spina Bifida go to regular schools, play sports, hang out with friends, and will definitely have their own distinctive personalities, goals, and dreams. Some adults with Spina Bifida go to college and have careers. There will always be challenges but more than ever, there are new therapies, resources, surgeries, and treatment plans for people living with Spina Bifida offering a greater hope for productive and full lives.