If you’ve just learned that your baby has spina bifida, you probably have a lot of questions and a lot of feelings. That’s normal. This page is for the first days and weeks: what the diagnosis means, who will be on your care team, what treatment looks like, and where to find support. It’s not a substitute for your own medical team, who know your baby’s details.

The short version

  • Treatment looks different for every child. It depends on the type of spina bifida and on the health issues that come with it, according to the CDC.
  • You’ll be cared for by a team. Doctors who work with different parts of the body, such as an orthopedist, a urologist, and a neurosurgeon, will check your baby and start care soon after birth.
  • Surgery to close the spine can happen before birth or in the first days of life. Before-birth surgery is a major procedure and isn’t offered everywhere.
  • Many children with spina bifida lead full lives, with ongoing care for mobility, bladder and bowel needs, and sometimes fluid on the brain.
  • It isn’t your fault. Folic acid lowers the risk, but it doesn’t remove it, and many babies with spina bifida are born to parents who did everything right.
  • You don’t have to do this alone. Support from other families and from the Spina Bifida Association can help.

What the diagnosis means

Spina bifida is a neural tube defect, which means the spine and spinal cord didn’t close completely in the first month of pregnancy. It ranges from mild to serious. The CDC describes three types: myelomeningocele (open spina bifida, the most serious), meningocele, and spina bifida occulta (the mildest). See What Causes Spina Bifida? for details.

Those born with open spina bifida usually have more health issues and need more types of treatment, according to the CDC. Your care team will tell you which type your baby has and what to expect. Ask them to explain it in plain words, and ask again as often as you need.

Your care team

Shortly after birth, doctors who specialize in different body systems check your baby and begin care, according to the CDC. The team may include:

  • An orthopedist, who works with muscles and bones
  • A urologist, who checks the kidneys and bladder
  • A neurosurgeon, who checks the brain and spine
  • Therapists who help with movement, and other specialists as needed

The Spina Bifida Association has written guidelines for the care of people with spina bifida, from birth through adulthood. Ask your provider whether your baby can be seen at a clinic that treats spina bifida regularly.

Treatment

These are the main pieces of care, according to the CDC and the NIH’s NICHD. Not every child needs all of them.

  • Closing the spine. When a baby is born with open spina bifida, the spinal cord is exposed, and doctors perform surgery to close it. It can happen before birth or within the first days of life.
  • Surgery before birth. This is a major procedure for both the mother and the baby, and it may not be available where you live. The CDC advises talking with a doctor who works regularly with babies with spina bifida and expectant mothers about the pros and cons. See What Causes Spina Bifida? for what a major study found.
  • Hydrocephalus. Many babies with spina bifida get hydrocephalus, extra fluid in and around the brain. It needs to be followed closely and treated to prevent brain injury. A surgeon can place a shunt, a small hollow tube that drains the fluid. A shunt may need more surgery as your child grows, or if it becomes clogged or infected.
  • Tethered spinal cord. If the spinal cord is pulled by surrounding tissue as a child grows, surgery can treat it.
  • Movement. Treatment for movement problems can start soon after birth. People with spina bifida use braces, crutches, walkers, or wheelchairs to get around.
  • Bladder and bowel. Many people with spina bifida can’t always control when they go to the bathroom. Care can include a catheter to empty the bladder, medicines, extra fiber, or surgery.
  • Skin. Parts of the body may have limited feeling, so cuts, sores, and pressure spots can go unnoticed. Check your child’s skin regularly for redness, including under braces.
  • Staying active. The CDC recommends 60 minutes of physical activity a day for children, and says it’s especially important when a condition affects movement.

Questions to ask your care team

  • What type of spina bifida does my baby have, and what does that mean for the first year?
  • Who will be on my baby’s care team, and who is our main contact?
  • Is there a spina bifida clinic near us, and can we be referred?
  • What are the options for surgery, and where would it be done?
  • What should we watch for with hydrocephalus and with the shunt?
  • Where can we find other families?

Support for you

Having support and community resources can raise your confidence in managing spina bifida and improve quality of life for the whole family, according to the CDC. The Spina Bifida Association offers information for expectant parents and families. Ask your care team about a social worker or counselor too.

If you feel overwhelmed, anxious, or very down, the National Maternal Mental Health Hotline is free and confidential, 24 hours a day, at 1-833-TLC-MAMA (1-833-852-6262).

If you plan another pregnancy

Talk with your doctor before you try. The CDC recommends 4,000 mcg of folic acid a day, starting 1 month before pregnancy and continuing through the first 3 months, under a doctor’s care, for women who have had a pregnancy affected by a neural tube defect. See Why Folic Acid Matters in Pregnancy.

What to do now

  • Write down your questions and bring someone to appointments if you can.
  • Ask for a referral to a spina bifida clinic or a team that treats it regularly.
  • Look at the Spina Bifida Association’s resources for families.
  • Take care of yourself, and reach out for support when you need it.

Related reading

Sources

Updated November 2026. This article is for general information and is not a substitute for advice from your baby’s health care providers.