Spina bifida

What is spina bifida?

Spina bifida is a congenital (present at birth) condition in which a child’s spinal column and spinal cord do not develop properly. In spina bifida, the spine bones do not completely close, leaving an opening that exposes the spinal cord, nerves, tissue and spinal fluid. Spina bifida can affect your child’s ability to move and function.

Scientific advances over the past several decades have improved care of spina bifida, and many of the more severe side effects of spina bifida are now rare. Although the severity of spina bifida varies from child to child, almost all children with this condition live full, fruitful lives.

What are the different types of spina bifida in children?

Spina bifida can happen anywhere on the spine, but it is most common in the lower back. The lower it happens on the spine, the less severe a child’s symptoms will be.

The three most common types of spina bifida are:

1. Spina bifida occulta is the mildest and most common type of spina bifida. Many children with this condition never know that they have spina bifida. The main sign of spina bifida occulta is a dimple, patch of hair or red mark on their lower back over the spine.

   • Tethered cord - Spina bifida occulta does not usually cause any disabilities. However, some children with this type of spina bifida may also have a condition called tethered cord. In this condition, the spinal cord does not move easily inside the spinal canal. Without treatment, a tethered cord can cause pain, trouble walking and loss of bladder control, which can occur at any time during your child’s growth. Tethered cord may require surgery to repair if it causes symptoms.

2. Meningocele is a rare, more severe type of spina bifida. In meningocele, the spinal fluid leaks out through the gap in your child’s spine. Sometimes, this leak can cause a small sac to emerge. This sac can cause a bulge in your child’s skin, although their nerves and spinal cord are in the right place in the spinal canal.

3. Myelomeningocele is the most severe type of spina bifida and the best-known type A sac containing part of your child’s spinal cord, its covering and spinal fluid pushes through the gap in your child’s spine, creating a bulge in the skin. Children with myelomeningocele often experience loss of feeling and movement in their legs or feet, and bladder and bowel dysfunction.

What are the signs and symptoms of spina bifida?

• A dimple, birthmark or small hairy patch on their back, in spina bifida occulta

• A small sac that bulges from the spine

• Bladder or bowel problems, such as frequent urinary tract infections

• Clubfoot or twisted legs and feet

• Sensitivity to latex, which is in bottle nipples, pacifiers and other baby products

• Developmental delays or learning disabilities

• Weak muscles or paralysis and problems walking

How is spina bifida diagnosed?

Spina bifida develops during the third and fourth week of pregnancy. Doctors can detect spina bifida during the second trimester of pregnancy through:

• A blood test that screens for a certain protein that indicates spina bifida

• An ultrasound to look at your unborn child’s spine

• Amniocentesis test that takes a small sample of fluid from the amniotic sac using a long, thin needle inserted through the mother’s abdomen

After a child is born, a doctor can diagnose spina bifida using imaging, such as:

• X-ray

• Computed tomography (CT) scans

• Magnetic resonance imaging (MRI)

What are the causes of spina bifida in children?

There is no single cause for spina bifida. Certain factors can increase the risk of having a baby with spina bifida, including:

• A diet too low in folic acid during pregnancy

• A family history of spina bifida

• Diabetes in the mother

• Certain medications, taken before or during pregnancy, that can cause folic acid deficiency, such as anti-epileptic medications and some cancer medications

At Children’s Health, our doctors screen every pregnant person for spina bifida in their baby during the second trimester.

Folic acid - Doctors recommend that pregnant people take 400 micrograms of folic acid daily, which is the amount found in prenatal vitamins. Certain foods, such as dark green vegetables, egg yolks and certain fruits, also provide the recommended daily amount. Although getting 400 micrograms of folic acid every day doesn’t guarantee that your baby will not have spina bifida, it can drastically reduce the risk.

How is spina bifida in children treated?

Children who have spina bifida occulta may never need treatment unless they experience health complications from their condition.

Children with more severe forms of spina bifida may need:

• Prenatal surgery - Children’s Health is one of the few hospitals in the region that has the special expertise to perform surgery on a fetus during pregnancy. Doctors in our FETAL Center work to repair the spinal opening while the baby is attached to the umbilical cord, then return the fetus to the mother’s womb. This procedure can reduce the likelihood that your child will have problems with walking and other movement.

• Neurosurgery - A neurosurgeon performs surgery on children with severe spina bifida a day or two after they are born to close the opening and prevent further damage or infection. Within your child’s first month of life, a neurosurgeon might also need to perform a procedure to help prevent increased fluid in your child’s brain.

• Orthopedic surgery - Your child may also need orthopedic surgery to correct any issues with their feet.

• Urology care - Often, children with spina bifida have nerve damage that keeps their bladder from emptying as it should. This bladder problem can cause frequent urinary tract infections (UTI) and kidney problems. Children with bladder issues may need help from our urologists (specialists in urinary tract conditions).

• Rehabilitation specialist - Consultation with a physiatrist or rehabilitation specialist. Most children with severe forms of spina bifida will experience developmental delays. Our physical medicine and rehabilitation specialists help ensure that your child is getting the therapies and equipment they need to succeed. They also help with accommodations for your child at school. They also might address issues such as pain, muscle tightness and skin problems due to limited movement and feeling.