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OVERVIEW

What is spina bifida?

Spina bifida is a birth defect that happens when a baby’s spine and spinal cord don’t close completely during development. This can cause damage to the spinal cord and nerves. It can cause lifelong problems, including physical and intellectual disabilities. Spina bifida is a neural tube defect.

Spina bifida develops in the first few weeks of pregnancy, often before someone even knows their pregnant.

There are three forms — and three levels of severity — of spina bifida.

• This is the most common, and least serious, form. It involves a small opening in the spine, but the spinal cord and nerves are healthy. A baby with this type doesn’t have any physical or intellectual disabilities. In fact, this type is usually diagnosed at an older age because there are no outward signs. It’s sometimes detected when a back X-ray is taken for another health issue.
• With this form, the spinal canal is leaking spinal fluid. Also, the spinal cord membranes are damaged. However, there’s no major nerve damage. These babies have a low risk of having a minor physical disability. They may have bowel and bladder control issues.
• This is the most severe form. With this, the spinal canal is open in many places on the baby’s back. The spinal tissues and nerves are sticking out through those openings in a small sac. Spinal fluid often leaks out as well. The spinal cord and nerves are severely damaged. Babies with this type may have paralysis in their lower body. They also may have bowel and bladder control issues.

SYMPTOMS

With the occulta form of spina bifida, symptoms may never occur. However, symptoms of the meningocele or myelomeningocele forms can be seen after your baby is born. They include:

• An unusually large head that is caused by hydrocephalus (fluid on the brain)
• A bulging soft spot on the top of your baby’s head
• Muscle weakness in your baby’s feet, hips, and legs

Also, if your baby has a dimple or unusual patch of hair in a certain spot on their back, this may alert your healthcare provider to test for spina bifida.

CAUSES

What causes spina bifida?

Healthcare providers aren’t sure what causes spina bifida. Genetics and ethnicity may play a role.

However, you can take steps to reduce the risk of having a baby with spina bifida.

• Health Canada recommends that all women who are planning or capable of pregnancy take a daily supplement containing 0.4 mg (400 µg) of folic acid. Talk to your healthcare provider about a higher dose if you already have a child with spina bifida.
• Talk to your healthcare provider about your current medicines.
• Control your diabetes and try to lose weight before getting pregnant.
• Avoid overheating your body.

DIAGNOSIS

How is spina bifida diagnosed?

It’s possible for your healthcare provider to diagnose your baby with spina bifida even before they’re born. Your healthcare provider may order additional screening during pregnancy if:

• You have another child with spina bifida.
• You have a family history of spina bifida.
• You haven’t been taking folic acid during your pregnancy.
• You have certain health conditions, such as diabetes or obesity.
• You take certain medicine for seizures or depression.

If your doctor wants to do a screening while you’re pregnant, they may do the following:

• Order a blood test to look at how much alpha-fetoprotein your baby is passing to you during pregnancy. This protein is produced in your baby’s liver. It passes through the placenta into the mother’s blood. Too much or too little AFP in the mother’s blood can signal a birth defect.
• Check the level of protein in your amniotic fluid, which is the fluid that surrounds your baby during pregnancy. This is done through a procedure called an amniocentesis.
• Set up an imaging test called an ultrasound. This lets your healthcare provider see your baby inside your body. An abnormal-looking spine may signal spina bifida.

Then, after your baby is born, your healthcare provider may order an X-ray, magnetic resonance imaging (MRI), or computed tomography (CT) scan to better check for and determine the severity of spina bifida.

PREVENTION

Can spina bifida be prevented or avoided?

Studies show that folic acid can reduce the risk of spina bifida. Folic acid is a vitamin present in women before and during pregnancy. A pregnant person should take 400 micrograms of folic acid every day throughout pregnancy. This is especially important for unplanned pregnancies. A higher dose may be necessary for pregnant people with certain risk factors. This includes obesity, diabetes, depression, or a family history of spina bifida.

Eating foods high in folic acid also can help. These include:

• Dark, leafy greens
• Beans
• Peas and lentils
• Seeds and nuts

TREATMENT

There’s no medicine or cure for spina bifida. Babies with myelomeningocele and meningocele will likely need treatment. That’s often in the form of surgery. When surgery happens depends on the type and severity of the condition. Some babies may have surgery while they’re still in their mother’s womb. Others will have surgery 1 to 2 days after being born. Some children will need to have repeated surgeries as they grow older.

If your baby has physical disabilities, your healthcare provider also may refer them to a physical therapist. This is a specialist who can help your child increase their strength and balance.

Living with spina bifida

Living with spina bifida depends on the severity of your child’s case. In minor instances, mild complications are possible, including:

• Abnormal nerve sensation
• Skin irritation
• Latex allergy

More serious cases may have severe complications, including:

• Choking and difficulty eating
• Stomach disorders
• Trouble walking
• Paralysis
• Difficulty breathing
• Learning and intellectual disabilities
• Depression (in teen and adult years)
• Urinary tract infections
• Hydrocephalus

In cases where a child has a hard time moving independently, a physical therapist can teach your child how to be mobile. This might include how to use leg braces, a walker, crutches, or a wheelchair.

More severe cases of spina bifida may affect your child’s learning and academic performance. Special education resources within your local school district may provide support. If your child has intellectual disabilities, resources in your community may be able to help them as they get older.