Infant Spina Bifida: What You Need to Know

Spina Bifida Surgery Medical Error

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Spina Bifida Surgery Medical ErrorUnless you’re pregnant or perhaps a fan of the hit PBS series “Call the Midwife,” you may not know what spina bifida is or looks like. Many haven’t seen it in person — just through pictures or TV shows and documentaries. However, if you find out your child has infant spina bifida at birth, you can be confused, worried, or scared. That’s natural, but even the most severe type of spina bifida can appear completely normal and many of these children live long and happy lives, outside of some medical needs such as leg braces or a wheelchair.

This post will discuss the causes of spina bifida, its types, how common it is, if it’s preventable, and how to get treatment and help.

What is spina bifida?

Spina bifida is a congenital defect that affects the spine, happening anywhere a neural tube does not close all the way. This results in the backbone not forming and closing over that spot, often damaging the nerves and spinal cord. In an open defect, you may see dura mater covering the spinal cord and spinal fluid on the outside of the body. Immediately after birth, you may only notice a hairy patch or dimple on baby’s back, but some cases are pronounced and can lead to life-threatening infections.

The physical and sometimes intellectual disabilities caused by spina bifida could be mild or severe, depending on where and how big the opening in the spine is, plus how damaged the spinal cord or nerves are. Paralysis of the legs is possible, particularly when the opening is at the top of the spine. At lower parts of the spine, symptoms are often less severe.

Neural tube defects can affect brain development, which can lead to cognitive problems. When excess cerebrospinal fluid builds up, it also can increase the risk of learning disabilities.

Types of Spina Bifida

There are three types of spina bifida, ranging from mild to severe. One may appear hidden, with some cases not diagnosed until late childhood or even adulthood, while the other two are apparent at birth.

Spina Bifida Occulta

This is the most mild form of spina bifida. In this type, there is just a small gap in the spine but no opening or sack on baby’s back. There is not generally nerve or spinal cord damage, and thus, no disabilities.


Baby’s back will have a sac of fluid coming through an opening, but it does not contain the spinal cord. With this type of spina bifida, some minor disabilities may be present despite a lack of or little nerve damage.


Similar to meningocele, where a fluid sac will be on baby’s back, part of the damaged spinal cord and nerves also come through in this sac. With this myelomeningocele spina bifida, called “open spina bifida,” the child may not be able to use the restroom or move his or her legs at all. Doctors may perform surgery before baby is even born to attempt to close the spine.

Issues Surrounding Spina Bifida

Aside from nerve and spinal cord damage, children may experience other problems associated with spina bifida. “Water on the brain,” or hydrocephalus, is common in babies born with spina bifida and must be treated properly by your medical team to prevent brain damage. A shunt placed in the brain by a surgeon will help drain the extra fluid, though additional surgeries may be needed in the future.

In cases of open spina bifida, baby’s spinal cord may be tethered rather than free-flowing, which can create permanent nerve damage as he grows. Although this is treatable with surgery, it can lead to scoliosis, bladder problems, and back pain.

Because of some bladder issues, children with spina bifida may develop urinary tract infections. Surgery may be recommended, but a catheter inserted into the bladder may help.

Spina bifida may cause loss of feeling in certain parts of the body, so it can be difficult to tell when there are sores or blisters. Check the skin, particularly under braces, for any tenderness and make sure your child does not sit or lie down in the same position for very long stretches of time.

Finally, people with spina bifida may be allergic to latex, so rubber nipples used for bottle-feeding baby would be a no-go.

How common is spina bifida?

The most serious type of spina bifida occurs in 60 births out of every 100,000. Of the 4 million children born in the U.S. every year, up to 2,000 of them will be affected by spina bifida. Hispanic women have the highest rate of children with spina bifida.

Women who are obese or have diabetes are at greater risk of having a child with spina bifida. There’s also an increased risk if you have a family history of spina bifida or have given birth to another child with spina bifida. The defect may occur alongside Down’s syndrome, Edwards’ syndrome, or Patau’s syndrome.

Some epilepsy and bipolar medications also have been linked to spina bifida.

Is spina bifida preventable?

According to the Centers for Disease Control and Prevention (CDC), spina bifida occurs within the first few weeks of pregnancy. Although spina bifida has unknown causes — studies regarding genetics, nutritional, and environmental factors are incomplete — health agencies suggest taking folic acid if you are or could get pregnant as a way of prevention.

While you’re pregnant, you might have a prenatal test — sometimes called a “triple screen” — that checks for things like spina bifida or other birth defects. The most mild form of spina bifida most likely won’t be diagnosed during pregnancy, and maybe even never at all.

There are three tests your doctor may perform while baby is still growing inside you. You should always speak with your doctor about any concerns you have with prenatal testing.

  • AFP (alpha-fetoprotein) test: AFP is a protein the baby produces, and this blood test measures how much has passed into the mom’s bloodstream. A high level could indicate spina bifida.
  • Amniocentesis test: Through an amniotic fluid sample, doctors can tell how much AFP is in the fluid.
  • Ultrasound test: This may be the most common way for a doctor to see if baby has spina bifida or notice any other sort of issues. A positive diagnosis may be missed if an ultrasound doesn’t show clear pictures of the part of the spine that’s affected.

See also: How Common are Birth Injuries and Birth Defects?

How is spina bifida treated?

Treatment of spina bifida will vary based on how severe the case, but it is possible to live with spina bifida. Here are a few ways.

Regular Physical Activity

Although spina bifida may affect mobility (wheelchair use is more common when the defect is closer to the brain), it’s important for children to get out and play every day. Babies can play on activity mats. Older children can take a walk or ride around in the neighborhood, exercise as recommended by a physical therapist, or go to a park. The CDC recommends 60 minutes of daily physical activity for all kids.

Regular Meetings with Specialists

Your primary care provider is your main go-to for your child, but you may also want to see a urologist, a neurosurgeon, or orthopedist for further treatment or surgeries.

Assessing Additional Needs

Sometimes, children with spina bifida may have other issues, such as vision problems or staying at a healthy weight, or they may become depressed. Learning also can be more difficult, in addition to relating to others. Early intervention programs through the community or your school may be helpful. It’ll be important for you to pay attention to your child’s additional needs and seek help or second opinions.

Get Help if Your Child has Spina Bifida

Anyone who has a child with spina bifida knows that they need support. Local resources and organizations full of mothers and fathers like you can be found through the Spina Bifida Foundation or your primary care provider.

While spina bifida is a birth defect, occasionally, a birth injury also may be involved during your child’s treatment. Perhaps your doctor was placing a shunt in baby’s brain to drain extra fluid, but a medical error or medical negligence occurred. In these instances, Safe Birth Project may be able to help. Contact us today for more information.

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