Spina Bifida

What is spina bifida?

Spina bifida is a condition in which there is abnormal development of the back bones, spinal cord, surrounding nerves, and the fluid-filled sac that surrounds the spinal cord. This neurological condition can cause a portion of the spinal cord and the surrounding structures to develop outside, instead of inside, the body. The defect can occur anywhere along the spine.

What are the types of spina bifida?

The types of spina bifida include the following:

 Illustration of three different degrees of spina bifida

  • Spina bifida occulta. A mild form of spina bifida in which the spinal cord and the surrounding structures remain inside the baby, but the back bones in the lower back area fail to form normally. There may be a hairy patch, dimple, or birthmark over the area of the defect. Other times, there may be no abnormalities in the area.

  • Meningocele. A moderate form of spina bifida in which a fluid-filled sac is visible outside of the back area. The sac does not contain the spinal cord or nerves.

  • Myelomeningocele. A severe form of spina bifida in which the spinal cord and nerves develop outside of the body and are contained in a fluid-filled sac that is visible outside of the back area. These babies typically have weakness and loss of sensation below the defect. Problems with bowel and bladder function are also common. A majority of babies with myelomeningocele will also have hydrocephalus, a condition that causes the fluid inside of the head to build up, causing pressure inside of the head to increase and the skull bones to expand to a larger than normal size.

Treatments

Treatments

Management of spina bifida

The primary goal of managing spina bifida is to prevent infection and to preserve the spinal cord and nerves that are exposed outside of the body. Specific management of spina bifida will be determined by your baby's doctor based on:

  • Your baby's gestational age, overall health, and medical history

  • The extent and type of spina bifida

  • Your baby's tolerance for specific medications, procedures, or therapies

  • Expectations for the course of spina bifida

  • Your opinion or preference

A cesarean delivery is often performed to decrease the risk of damage to the spinal cord that may occur during a vaginal delivery. Babies born with a meningocele or a myelomeningocele usually require care in the neonatal intensive care unit (NICU) for evaluation and for surgery to close the defect. Surgery can help manage the problems, but it cannot restore muscle function or sensation to a normal state. Surgical interventions may be needed for the following:

  • Repair and closure of the lesion

  • Treatment of hydrocephalus

  • Orthopedic problems. Orthopedic problems may include curvatures in the back, hip dislocations, ankle and foot deformities, and contracted muscles. Babies and children with spina bifida are also very susceptible to breaking their bones since their bones may be weaker than normal.

  • Bowel and bladder problems. Bowel and bladder problems may require surgery to improve function in elimination, for incontinence, constipation, or when the bladder does not empty completely.

Following surgery, you will receive instructions on caring for your baby at home. Education may include the following:

  • Examining the skin, especially over bony areas, such as the elbows, buttocks, back of the thighs, heel, and foot areas. Recommendations may include changing your baby's position frequently to prevent skin breakdown and pressure sores.

  • Promoting bowel and bladder function

  • Ways to feed you baby and monitor your baby's nutrition

  • Promoting activity and mobility

  • Encouraging age-appropriate growth and development

Not all babies will require surgical repair of spina bifida. Nonsurgical management of spina bifida may include the following:

  • Rehabilitation

  • Positioning aids (used to help the child sit, lie, or stand)

  • Braces and splints (used to prevent deformity, promote support or protection)

  • Medications

Latex precautions

Babies with spina bifida are at high risk for developing a latex allergy due to exposure to latex from multiple medical and surgical procedures. Precautions are taken by the health care team to reduce the baby's exposure to products that contain latex. Your baby's health care providers can help you identify products that contain latex and also find products that are latex-free.

Lifelong considerations

Spina bifida is a lifelong condition that is not curable. Management often focuses on preventing or minimizing deformities and maximizing the child's capabilities at home and in the community. Positive reinforcement will encourage the child to strengthen his or her self-esteem and promote as much independence as possible. Aggressive physical and occupational rehabilitation, as well as appropriate educational interventions through a multidisciplinary approach, can maximize the child's functional capacity.

The full extent of the problem is usually not completely understood immediately after birth, but may be revealed as the child grows and develops.

Future pregnancies

Genetic counseling may be recommended by your doctor to discuss the risk of recurrence in a future pregnancy, as well as vitamin therapy (a prescription for folic acid) that can decrease the recurrence risk for ONTDs. Supplemental folic acid if taken one to two months prior to conception and throughout the first trimester of pregnancy has been found to decrease the reoccurrence of ONTDs for couples who have had a previous child with an ONTD.

Children's Team

Children's Team

Providers

Sarah Evans

Division Chief, Pediatric Rehabilitation Medicine
oetgen

Matthew Oetgen

Division Chief, Orthopaedic Surgery and Sports Medicine
Our Stories

Our Stories

Patient story

Mark's Story

"Life with Mark has been a journey of faith. Not only has he enriched our lives, but he has brought into our lives wonderful people who have helped us on our journey. And we also are enriched as we are able to help others."

John Myseros

John Myseros' Story

Dr. Myseros began at Children’s National more than five years ago and has a personal and professional interest in the care of children with tumors of the brain and spinal cord.

Departments

Departments

Neurosurgery

Our neurosurgery experts provide advanced care for newborns and children with complex neurological conditions.

Orthopaedic Surgery and Sports Medicine

Our orthopaedic experts provide advanced care for children and teens with orthopaedic conditions and sports injuries.

Spina Bifida Program

The Spina Bifida Program at Children’s National Health System is a leader in caring for the infants, children and young adults with deformities and abnormalities of the spine and spinal cord. 

Fetal Medicine Institute

Our fetal medicine team provides specialized, expert care for babies during pregnancy, delivery, and the postnatal period.

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John Myseros' Story

John Myseros

Dr. Myseros began at Children’s National more than five years ago and has a personal and professional interest in the care of children with tumors of the brain and spinal cord.

Read More of John Myseros' Story