What is Spina Bifida?

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Contact the Spina Bifida and Spinal Cord Conditions Center

  • 617-355-8532
  • International: +1-617-355-5209
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Between 1,400 and 2,000 babies are born with spina bifida in the U.S. each year—but not all of these children have the same needs. Our Spina Bifida Center develops treatment plans customized to meet the varied needs and changing circumstances of every child’s unique condition.

Spina bifida – a term that means “split spine” – happens when the brain, spinal cord and/or meninges (protective covering around the brain and spinal cord) do not completely develop. It is the most common neural tube defect in the U.S.

What Causes Spina Bifida?

The cause of spina bifida remains unknown. It is associated with genetic, nutritional and environmental factors. Research studies indicate that a key factor may be a lack of folic acid—a common B vitamin—in a pregnant woman’s diet. This is one reason why prenatal vitamins, which typically contain folic acid, are recommended to women during pregnancy.

More than 90 percent of cases occur without a prior family history. However, if one parent has spina bifida, there’s a 1 in 25 (4 percent) chance of passing spina bifida to your baby. If you already have a child with spina bifida, there’s a 1 in 25 (4 percent) chance of having another baby with the condition.

Types of Spina Bifida

There are three major types of spina bifida:

  • Spina bifida occulta (hidden): The mildest and most common form of the condition. A gap exists in at least one of the bones in the spine (vertebrae), but the skin is intact and the nerves and spinal cord don’t protrude. This form of spina bifida is present in 10-20 percent of the population, and rarely causes symptoms or disability.
  • Meningocele: A moderate (and the least common) form of spina bifida. Membranes that cover the brain and spinal cord (meninges) protrude through a defect in the spinal column. Surgery can usually repair these meninges with little risk of nerve damage.
  • Myelomeningocele: The most severe form of spina bifida. The backbone and spinal cord fail to close and the spinal cord does not develop normally. Children with this type are often fully or partially paralyzed below the defect and have difficulty with bladder and bowel control. Nerve damage and other severe brain impairments are also common.

Spina Bifida Signs and Symptoms

The signs and symptoms of spina bifida vary widely, depending on the type and its severity. In cases of severe spina bifida (myelomeningocele) symptoms and associated health problems typically include:

  • Hydrocephalus: Spinal fluid build up in and around the brain
  • Impaired cognitive development: Including learning disabilities
  • Chiari II malformation: Vocal cord weakness, difficulty swallowing, leg weakness and spinal deformities caused by portions of the brain that are pushed downward into the upper part of the spine.
  • Paralysis: Loss of function of the lower spine, or loss of movement in the legs and feet
  • Orthopedic (bone) problems: Over time, children may develop scoliosis, kyphosis, hip dislocation, joint deformities, clubfoot or weak bones.
  • Nervous system problems: Including weakness in the legs or feet, back pain, leg pain
  • Bladder/bowel problems: Including impaired control
  • Tethered cord: Spinal abnormalities caused when a child’s spinal cord is abnormally attached to the tissues around the spine.
  • Urinary tract infections and/or kidney damage

How is Spina Bifida Detected?

Boston Children’s Hospital is renowned for advanced and accurate spina bifida testing and compassionate prenatal care of spina bifida. Many families come to our center for definitive diagnosis, comprehensive prenatal and postnatal testing or an objective second opinion. Tests to detect spina bifida include:

  • Prenatal ultrasounds and/or MRI performed by skilled radiologists using advanced equipment designed for fetal imaging
  • Spinal ultrasounds for babies who are less than 4 months old to detect spinal cord abnormalities that may require surgery
Boston Children’s provides uniquely comprehensive and advanced evaluations that can give doctors and families further information about the condition, suggest minimally invasive treatment options or even rule out the need for certain procedures. Some of these tests include:
  • A world-renowned urodynamics study to assess how well your child's bladder and urethral sphincter are doing at collecting, holding and releasing urine.
  • A full neurological assessment both before and after spinal surgery

Learn more about the spina bifida testing options we offer at Boston Children’s Hospital.

Spina Bifida Treatment at Boston Children’s Hospital

Our pioneering advancements and roadmap for treatment set a precedent for spina bifida centers around the world. Our approach includes caring for the whole child and their families—from minimally invasive surgeries to increase life span and improve quality of life to transition care for adults with spina bifida.

Most babies born with spina bifida will require surgery within 24-48 hours to repair the spine, followed by additional surgeries throughout their lifetime. At Boston Children’s, our doctors and specialists have led the way in spina bifida surgery for decades, including:

  • Groundbreaking, minimally invasive techniques for treating the abnormal build-up of fluid in the brain—known as hydrocephalus—that is common in patients with spina bifida, including endoscopic third ventriculostomy choroid plexus cauterization (ETC/CPC). This procedure alone, perfected at Boston Children’s by our own Dr. Benjamin Warf, is why many expectant mothers of babies with Spina Bifida choose to come to Boston to have their babies. Put simply, it’s a safer, permanent alternative to a shunt for the management of spinal fluid present in hydrocephalus.
  • Pediatric robotic surgery, allowing highly trained surgeons to perform complex postnatal operations on children through very small openings, thereby reducing pain, recovery times, and hospital stays.

Learn more about these and other spina bifida treatments at Boston Children’s Hospital.

Make an Appointment

For an appointment, more information or to obtain a second opinion for your child, please call us at 617-355-8532 or request an appointment online.

Spina Bifida Nurse Line at Boston Children’s

If you have a medical question about your child with spina bifida, please call our Nurse Line at 617-355-7704.

The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944