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Spina bifida

About spina bifida

Spina bifida is a neural tube defect, which is a congenital disability (present at birth) that affects the spinal cord. Spina bifida occurs when the neural tube along the spine does not close all the way. When this happens, the backbone does not form completely, which often leads to spinal cord and nerve damage as well as conditions that may affect the brain.

Children with spina bifida often have complications with the urinary tract, including a neurogenic bladder. This means the nerves between the spinal cord and brain do not send signals properly – like letting the brain know it’s time to urinate. It may also be difficult to completely empty the bladder. When the kidneys and bladder don’t work properly, it can cause recurrent urinary tract infections and lead to kidney damage.

Our urologists work alongside specialists in our spina bifida clinic to provide comprehensive and effective care for your child. Together, we’ll create a plan that supports your child, monitors their care and keeps them healthy and thriving.

Is spina bifida common in children?

Spina bifida is the most common neural tube defect. It’s estimated that it affects about 1,427 babies. Neurogenic bladder and urologic complications are very common among children with spina bifida. Only about 5% can empty their bladders on their own.

Causes of spina bifida

It’s not completely clear what causes spina bifida. It may be a combination of genetics and environmental factors. Fortunately, research has proven that there are clear steps women can take to reduce the risk of their babies being born with spina bifida, including:

  • Taking 400 micrograms (mg) of folic acid every day
  • Talking to your doctor about prescriptions, over-the-counter medications, vitamins, and herbal or dietary supplements
  • Making sure preexisting conditions, like diabetes, are under control before getting pregnant

Signs of spina bifida

A doctor can diagnose spina bifida during pregnancy or shortly after the baby is born. During your pregnancy, an ultrasound may show images of your baby’s spine that indicate spina bifida. A blood test may also detect levels of a specific protein (alpha-fetoprotein or AFP) in your blood. If there are high levels of AFP, it may indicate your baby has spina bifida. Amniocentesis can also measure AFP levels.

After birth, your baby’s doctor may order additional imaging tests to check the spine if they notice a dimple or hairy patch of skin on the baby’s back. Images from an X-ray, magnetic resonance imaging (MRI) or computed tomography (CT) can identify defects with the neural tube and spine.

What can you do about spina bifida?

Children born with spina bifida can lead a relatively normal and high-quality life. At CHoR, your child’s care is managed by a team of experts who monitor, diagnose and treat complications resulting from spina bifida. Your child’s urologist will specifically manage and treat kidney and bladder issues.

There are many therapy options for urological conditions in children with spina bifida. Your child’s care plan may include:

  • Biofeedback therapy to improve bladder and bowel function
  • Injection therapies, such as Botox
  • Neurogenic bladder therapies (catheterization, antibiotics, medication)
  • Routine surveillance to monitor kidney and bladder function
  • Surgery
  • Urinary tract infection treatment and prevention

Learn more about our spina bifida clinic