Spina Bifida

Spina bifida is the most common type of neural tube defect—a type of birth defect that affects the brain, spine, or spinal cord. UI Health Care offers comprehensive, personalized care for babies born with spina bifida throughout their lifetime.

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Spina bifida is a birth defect of the brain, spine, or spinal cord. It is known as a neural tube defect and occurs if the spinal column of the fetus doesn't close completely during the first month of pregnancy. This can lead to the spinal cord and nerves becoming damaged.

While there are screening tests that can determine if your child has spina bifida during pregnancy, mild cases are sometimes not discovered until after the baby is born.

A team-based approach to spina bifida care

Spina bifida affects many different parts and systems in the body, which means babies born with spina bifida depend on a collaborative, multidisciplinary approach to care that often begins before the baby is even born.

At University of Iowa Stead Family Children’s Hospital, our pediatric specialists in maternal-fetal medicine, neurosurgery, orthopedics, urology, and physical medicine and rehabilitation will come together to help create a personalized treatment plan that addresses all your child’s needs. They work together to treat and manage symptoms and monitor your child’s development over time to optimize their growth and potential.

Our maternal-fetal medicine specialists also collaborate with our neurosurgery team to prepare parents who receive a spina bifida diagnosis before their child is born. This neonatal program will provide support and resources to help prepare you to manage your child’s condition and treatment.

Types of spina bifida

There are different types of spina bifida. These include:

This type of spina bifida is also known as “hidden” spina bifida and is the mildest form. Instead of an opening or sac on the baby’s back, there is a small, unseen gap in the spine. The spinal cord and nerves usually develop normally, which means that many people are not diagnosed with spina bifida occulta until late childhood or early adulthood. Surgery is often not required.

Myelomeningocele is the most serious type of spina bifida. With this type, the backbone and spinal canal do not fully close before birth, resulting in a baby being born with a sac of fluid on their back that contains a damaged part of the spinal cord and nerves. Surgery is required to repair it.

With meningocele, a baby is born with a sac on their back that contains some of the protective membranes that form around the spinal cord. The spinal cord itself usually develops normally. Many babies born with meningocele spina bifida do not experience symptoms or disabilities. Surgery is required to repair it.

Infants with this condition may be born with a sacral dimple, a tuft of hair, birth mark, or extra fat near the base of their spine. These signs on the skin can indicate a concern about the development of the spinal cord and nerve roots. Surgery is typically required to repair it.

Symptoms of spina bifida

Not every child with spina bifida will experience symptoms or disabilities. Depending on the type and severity of their spina bifida, they might experience:

Scoliosis
Loss of bladder or bowel control
Urinary tract infections
Weakness or paralysis in the lower body
Pain in the back or legs
Hydrocephalus (fluid inside the skull)
Clubfoot
Intellectual and developmental disabilities

Spina bifida causes and risk factors

While the exact cause of spina bifida is unknown, there are several things that can increase your baby’s risk of developing the condition, including:

Folic acid deficiency. Lacking folic acid in your diet during pregnancy can increase the chance of your child being born with spina bifida. While folic acid can be found in a variety of foods, folic acid supplements are recommended for people who are trying to conceive and are pregnant.
Family history of spina bifida. If you or anyone in your immediate family has had spina bifida, there is an increased risk of your child also being born with the condition.
Medications. Certain medications can also increase the risk of your child being born with spina bifida. Make sure you tell your provider about any prescriptions and over-the-counter medications you are taking, including any vitamins and herbal or dietary supplements.
Medical conditions. If you have existing conditions such as diabetes or obesity, there is an increased risk of your child being born with spina bifida. Talk to your provider about how to best manage your condition during pregnancy.

How spina bifida is diagnosed

There are screenings and tests that can diagnosis your child with spina bifida as well as other birth defects during pregnancy. These prenatal tests include:

Blood tests. Alpha-fetoprotein (AFP) is a protein that an unborn baby produces. A blood test can measure how much AFP has been passed to the mother via the bloodstream. If there is a high level of AFP in the mother’s system, this could indicate that the baby has spina bifida.
Ultrasound. Some types of spina bifida can be seen using ultrasound imaging while the baby is still in the womb. If your blood test comes back high for AFB, your provider may perform an ultrasound to confirm if the baby has spina bifida or if the high AFP level is from a different issue.
Amniocentesis. This test involves taking a small amount of amniotic fluid (the fluid inside the womb surrounding the baby) and testing the AFP levels.

If your child was not tested before birth and is born with a dimple or hairy patch of skin on their back, your provider may order imaging tests such as an X-Ray, MRI (magnetic resonance imaging), or CT (computed tomography) scan to determine if your baby may have a type of spina bifida.

Treatments for spina bifida

Because not everyone born with spina bifida has the same symptoms or disabilities our specialists will create a comprehensive treatment plan that will address your child’s specific needs. This may include:

If your child is born with a type of spina bifida that has pushed the spinal cord and nerves out of the spine, it is necessary for your baby to have surgery within 48 hours of birth to help avoid any serious risk of infection. After birth, your provider will immediately consult specialists in neurology to assess your child for surgery. While this can repair the defect, it does not reverse any nerve damage that may have occurred.

If your child’s spina bifida causes bone development issues such as clubfoot, orthopedic surgery or casting may be required for treatment.

Some children with spina bifida develop a condition called hydrocephalus (excessive fluid on the brain). This will require surgery to implant a shunt into the brain that will drain excess fluid.

Spina bifida can cause pain, weakness, and deformity in the lower body. Physical therapy can help prevent or delay further impairment, helping someone with spina bifida become or remain independent.

Children with limited mobility will need to use a wheelchair or walking aids such as braces or splints.

Many children with spina bifida have issues controlling their bladder and require treatment. These may include antibiotics or other medications, urinary catheters, or bladder surgery.

Bowel problems are common for children with spina bifida. Treatment for these could include laxatives, suppositories, enemas or anal irrigation, or a colostomy.

Spina bifida can affect cognitive function. Thus, regular developmental and cognitive assessment are important for early identification of developmental or cognitive delays and to facilitate access to appropriate interventions including academic accommodations. Individuals with spina bifida can experience increased symptoms of mood and anxiety disorders, warranting regular psychosocial screening and referral to psychological therapy was needed.