Spina bifida is a condition that occurs when the spine and spinal cord don’t form properly. It’s a type of neural tube defect. The neural tube is the structure in a developing embryo that later becomes the baby’s brain and spinal cord and the tissues that enclose them.

Typically, the neural tube forms early in pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube doesn’t close all the way. This affects the spinal cord and bones of the spine.

Spina bifida can range from being mild to causing serious disabilities. Symptoms depend on where on the spine the opening is located and how big it is. Symptoms also depend on whether the spinal cord and nerves are involved. When necessary, early treatment for spina bifida involves surgery. However, surgery doesn’t always completely restore lost function.

Types

Spina bifida occurs in different types: spina bifida occulta, myelomeningocele (my-uh-lo-muh-NING-go-seel) or the very rare type, meningocele (muh-NING-go-seel).

Spina bifida occulta

Occulta means hidden. Spina bifida occulta is the mildest and most common type. This type of spina bifida results in a small separation or gap in one or more of the bones of the spine, called vertebrae. Many people who have spina bifida occulta don’t know they have it. It may be found during an imaging test such as an X-ray that is done for another reason.

Myelomeningocele

Myelomeningocele is the most serious type. It also is known as open spina bifida. The spinal canal is open along several vertebrae in the lower or middle back. Part of the spinal cord, including the spinal cord’s protective covering and spinal nerves, push through this opening at birth, forming a sac on the baby’s back. Tissues and nerves usually are exposed. This makes the baby prone to dangerous infections. This type also may cause loss of movement in the legs, and bladder and bowel dysfunction.

Meningocele

This is a rare type of spina bifida. In this type, a sac of spinal fluid bulges through an opening in the spine. No nerves are affected and the spinal cord isn’t in the fluid sac. Babies with meningocele may have some minor trouble with functioning, including with the bladder and bowels.

Symptoms of spina bifida vary by type and from one person to another.

When to see a doctor

Typically, myelomeningocele is diagnosed before or right after birth, when medical care is available. Children diagnosed with this condition should be followed by a specialized team of healthcare professionals throughout their lives. Families can be educated on the different complications to watch for.

Children with spina bifida occulta typically don’t have symptoms or complications. In these children, usually only routine pediatric care is needed.

The cause of spina bifida is not known. It’s thought that a combination of genetic, nutritional and environmental risk factors causes the condition. This includes having a family history of neural tube defects and getting too little folate, also known as vitamin B-9, during pregnancy.

Spina bifida is more common among Hispanic people and white people. Also, female babies are affected more often than male babies. Although healthcare professionals and researchers don’t know why spina bifida occurs, they have identified some risk factors:

If you have known risk factors for spina bifida, talk with your healthcare professional. You may need a larger dose or prescription dose of folic acid, even before a pregnancy begins.

Also tell your healthcare professional about all of the medicines you take. If you plan ahead, some medicines can be adjusted to lower the potential risk of spina bifida.

Spina bifida may cause minimal symptoms or it can lead to more-serious physical conditions. Symptoms are affected by:

A number of complications may affect children with spina bifida. But not all children get all of these complications. Many complications can be treated.

You can greatly reduce your risk of having a baby with spina bifida or other neural tube defects by taking folic acid supplements. Begin taking the supplements at least one month before becoming pregnant and continue taking them through the first trimester of pregnancy.

Get folic acid first

Having enough folic acid in your body by the early weeks of pregnancy is critical to prevent spina bifida. But many people don’t discover that they’re pregnant until this time. For this reason, experts recommend that all people of childbearing age take a supplement of 400 micrograms (mcg) of folic acid a day.

It’s also helpful to eat foods that contain folate or have had folic acid added to them, known as fortification. Foods that are fortified with folic acid include:

Folic acid may be listed on food packages as folate, which is the natural form of folic acid found in foods.

Planning pregnancy

Adults who are planning pregnancy or who could become pregnant need to get 400 to 800 mcg of folic acid a day.

The body doesn’t absorb folate as easily as it absorbs folic acid, and most people don’t get the recommended amount of folate through diet alone. Vitamin supplements that include folic acid are necessary to prevent spina bifida. It’s also possible that folic acid may help lower the risk of other conditions that may be present at birth. These conditions include a cleft lip, a cleft palate and some heart conditions.

It’s also a good idea to eat a healthy diet that includes foods rich in folate or fortified with folic acid. This vitamin is present naturally in many foods, including:

When higher doses are needed

If you have spina bifida or if you’ve previously given birth to a child with spina bifida, you need extra folic acid before you become pregnant. If you’re taking anti-seizure medicines or you have diabetes, you also may benefit from a higher dose of this B vitamin. Check with your healthcare professional before taking additional folic acid supplements.

Tests before the birth of a baby, known as prenatal screening, can check for spina bifida and other conditions. The tests aren’t perfect. Some people who have positive blood tests have babies without spina bifida. Even if the results are negative, there’s still a small chance that spina bifida is present. Talk with your healthcare professional about prenatal testing, its risks and what the results mean.

Blood tests

Spina bifida can be screened with blood tests during pregnancy, but typically the diagnosis is made with an ultrasound exam.

Ultrasound

An ultrasound is the most accurate way to diagnose spina bifida in your baby before delivery. During pregnancy, an ultrasound may be done in the first 11 to 14 weeks of pregnancy, known as the first trimester. Or it may be done at 18 to 22 weeks, known as the second trimester. Spina bifida can be more accurately diagnosed during the second trimester ultrasound exam. This exam is crucial to identify and rule out conditions that may be present at birth.

An advanced ultrasound can detect symptoms of spina bifida, such as an open spine or features in the baby’s brain. Sometimes ultrasound also can help your healthcare professional see how serious spina bifida is.

Amniocentesis

If the prenatal ultrasound confirms the diagnosis of spina bifida, your healthcare professional may request a test called amniocentesis. During this test, a needle is used to remove a sample of fluid from the amniotic sac that surrounds the baby. This exam may be important to rule out genetic diseases.

Talk to your healthcare professional about the potential risks of amniocentesis. There’s a slight risk of loss of the pregnancy.

Spina bifida treatment depends on how serious the condition is in your baby. Spina bifida occulta often doesn’t need any treatment at all, but other types of spina bifida do.

Surgery before birth

Nerve function in babies with spina bifida can get worse if it’s not treated. Prenatal surgery for spina bifida, also known as fetal surgery, takes place before the 26th week of pregnancy. Surgeons open the pregnant person’s stomach and then the womb, also known as the uterus. The unborn baby’s spinal cord is repaired. Then the surgeon closes the uterus and stomach. Sometimes this procedure can be done less invasively with a special surgical tool called a fetoscope. Instruments are inserted into the uterus through tiny ports to perform surgery on the unborn baby.

Research suggests that children with spina bifida who have fetal surgery may have less disability and be less likely to need crutches or other walking devices. Fetal surgery also may lower the risk of hydrocephalus. Ask your healthcare professional whether this procedure may be right for you. Ask about the potential benefits. Also ask about the risks to you and your baby, such as premature delivery and other complications.

It’s important to have a comprehensive evaluation to determine whether fetal surgery can be done. This specialized surgery should only be done at a healthcare facility with experienced fetal surgery experts, a multispecialty team and neonatal intensive care. Typically, the team includes a fetal surgeon, a pediatric neurosurgeon, a maternal-fetal medicine specialist, a fetal cardiologist and a neonatologist.

Cesarean birth

Many babies with myelomeningocele tend to be in a feet-first position, known as breech. Cesarean birth may be a safer way to deliver if your baby is breech or has a large cyst or sac.

Surgery after birth

Myelomeningocele requires surgery to close the opening in the baby’s back within 72 hours of birth. Early surgery can help lower the risk of infection associated with the exposed nerves. It also may help protect the spinal cord from more trauma.

During the procedure, a neurosurgeon places the spinal cord and exposed tissue inside the baby’s body and covers them with muscle and skin. At the same time, the neurosurgeon may place a shunt in the baby’s brain to control hydrocephalus.

Treatment for complications

In babies with myelomeningocele, nerve damage that can’t be repaired has likely already occurred in the uterus. Ongoing care from a multispecialty team of surgeons, physicians and therapists usually is needed. Babies with myelomeningocele may need more surgery for complications. Complications can include weak legs, bladder and bowel issues, or hydrocephalus. Treatment typically begins soon after birth.

Treatment options may include:

Ongoing care

Children with spina bifida need close follow-up care and observation. Their healthcare professionals evaluate their growth, the need for vaccinations and general medical issues. Medical care is coordinated among specialists.

Children with spina bifida often need treatment and ongoing care from healthcare professionals with expertise in:

Parents and other caregivers are a key part of the team. They can learn how to help manage a child’s condition and how to encourage and support the child emotionally and socially.

News that your newborn child has a condition such as spina bifida can naturally cause you to feel many emotions. It’s important to know that people with spina bifida live active, productive and full lives — especially with encouragement and support from loved ones. Children with spina bifida can go to college, hold jobs and have families.

Special accommodations may be necessary along the way. But encourage your child to be as independent as possible.

Independent mobility is an important and appropriate goal for all children with spina bifida. This may mean walking with or without braces, using walking aids such as canes or crutches, or using a wheelchair. Encourage your child to engage in activities with peers. Caregivers can help adjust activities to accommodate physical disabilities.

Many children with spina bifida have typical intelligence, but some may need educational help for learning disabilities. They may have trouble with attention, concentration or language that requires treatment from professionals outside of school.

As for any child with a chronic medical condition, children with spina bifida may benefit from meeting with mental health professionals. A child psychologist and other mental health professionals can help with adjustment and coping. Most children with spina bifida are resilient and adapt to their challenges with support from their parents, teachers and other caregivers.

If your child has spina bifida, you may benefit from finding a support group of other parents who are dealing with the condition. Talking with others who understand the challenges of living with spina bifida can be helpful.

Your healthcare professional may suspect or diagnose your baby’s condition during your pregnancy. You’ll likely consult with a multispecialty team of physicians, surgeons and physical therapists at a center that specializes in spina bifida treatment.

Here’s some information to help you get ready for your appointment and know what to expect.

What you can do

To prepare for the appointment:

For spina bifida, some basic questions to ask include:

In addition to the questions that you’ve prepared, don’t hesitate to ask other questions during your appointment.

What to expect from your doctor

Being ready to answer questions from your healthcare professional may give you time to go over any points you want to focus on. You may be asked:

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