Spinal Column Abnormality

Pediatric spina bifida is a neural tube defect that prevents a baby's spinal column from closing completely in the first four weeks after conception. The abnormality can be located anywhere on the spine. It can typically be seen as an opening at the back of your baby's neck. It may also appear as a sack of fluid, which may include the spinal cord outside of your baby's spine.

The cause of pediatric spina bifida is unknown, but genetics and environmental factors may play a role. A lack of folic acid may also increase the likelihood of developing the condition.

Symptoms, Diagnosis and Outlook

There are three main types of pediatric spina bifida. The symptoms vary according to the type and may be different for each child.

Myelomeningocele

Myelomeningocele is a sack located outside an opening in your baby's back, containing parts of the spinal cord and nerves.

Symptoms of this type of pediatric spina bifida include:

  • Open spinal column, usually in the middle or lower back
  • Membranes and spinal cord pushed outside the back into the sack
  • Weak or paralyzed leg muscles
  • Deformed feet
  • Uneven hips
  • Bowel and bladder problems

Meningocele

Meningocele is a sack of fluid outside the opening on your baby’s neck that does not contain any portions of spinal cord.

Symptoms include:

  • A small opening in the back
  • Visible sack at birth
  • Membranes

Spina Bifida Occulta

Spina bifida occulta may go unnoticed until your child grows older. It produces a gap in your child’s spine, but does not cause an opening in the back or damage to the spinal cord and nerves.

Symptoms include:

  • A gap between the vertebrae
  • No visible opening or fluid-filled gap in the back
  • Small group or cluster of hair on the back
  • An area on the back with extra fat

Pediatric spina bifida may be diagnosed through prenatal screening or after your baby is born. If detected prenatally, your first step is a consultation with a spina bifida specialist. The experts at Penn State Health Children's Hospital can evaluate your baby in the womb to determine if fetal surgery is an option. They will outline a plan of care that takes you from the moment of diagnosis through your baby's first few months.

Although pediatric spina bifida can present serious health challenges, children with the condition can lead active, healthy lives with proper treatment.

Why Choose Penn State Health Children’s Hospital for Care

National Spina Bifida Registry Demonstration Project

The spina bifida program at Penn State Health Children’s Hospital is one of only 20 in the country that has been selected to participate in the National Spina Bifida Registry Demonstration Project. The registry was funded by the Centers for Disease Control and Prevention to track long-term outcomes for children and adults with spina bifida and to perform research into these disorders.

Penn State Health Children's Hospital is the second largest contributor of data to the registry. We support this research method to enable multi-institutional collaboration that will lead to improved best practices and treatments for children with spina bifida.

In 2020, our Spina Bifida program was also designated as an official Spina Bifida Association Clinic Care Partner.

Innovative Care for a Complex Condition

Other institutions may recommend surgery in every case of pediatric spina bifida, but the experts at Penn State Health Children’s Hospital use a stepwise algorithm, paired with exceptional clinical judgment and years of experience, to help us determine an appropriate treatment plan for your child.

Our specialists often start with nonoperative measures, such as physical or occupational therapy or therapeutic massage. When surgery is necessary, we offer the latest minimally invasive techniques for children, as well as expertise in subsequent surgeries to correct deformities or place or repair shunts.

Our entire team focuses on the best management of your child’s condition and symptoms, taking a holistic approach to their care.

Patient Story

When arriving at Penn State Health Children's Hospital, Stella excitedly shouts, "Megan!" the name of her friend who works at the information desk.

Throughout her hospital stays, she asks for ChildLife workers Erin and Megan and facility dog Becky by name. During IV sticks or dressing changes, she requests favorite nurses Nicole and Alli for comfort.

Support Groups

Support groups provide children and their families an opportunity to connect with others in similar situations. Learn more about the support groups offered at Penn State Health Children’s Hospital.

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