Effects of Spina Bifida in Children and Adults

Updated on 2024-05-16 14:52:28 0 0

By Kristen Gasnick, PT, DPT

Medically reviewed by Jonathan B. Jassey, DO

Spina bifida is a congenital condition in which the spine does not develop fully, leaving an opening that exposes the spinal cord. Spina bifida can occur anywhere along the spine, from the neck to the lower back, and can cause a variety of complications. While there is no cure for spina bifida, different treatment methods are available to reduce the risk of complications and decrease symptoms from affecting quality of life.

This article will discuss causes of spina bifida, how it affects children and adults, and treatment options.

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Spina Bifida Causes: What’s Responsible for the Spinal Defect?

Spina bifida is a congenital condition, meaning that it develops before birth during development. The neural tube that develops into the brain and spinal cord does not form correctly, leaving an opening in the spinal column that exposes the spinal cord. Exposure of the spinal cord can lead to damage of its nerve cells, which can destroy their function.1

Types of Spina Bifida

The three main types of spina bifida are:2

Myelomeningocele: This is the most common and most severe form of spina bifida. In it a fluid-filled sac containing damaged parts of the spinal cord and nerves develops through an opening in the baby’s back. This type of spina bifida can cause muscle paralysis and sensory loss.
Meningocel: This is a less severe form of spina bifida, in which a fluid-filled sac, which does not contain the spinal cord or nerves, develops through an opening in a baby’s back. This type of spina bifida causes little nerve damage and typically only minor.
Spina bifida occulta: This is the mildest form, in which a small gap forms in the spine without any opening or fluid-filled sac on the back. This type of spina bifida is usually not discovered until late childhood or adulthood and often does not cause any disabilities.

The development of spina bifida usually is genetic, with 60%–70% of cases being linked to mutated genes. For other cases of spina bifida without a genetic link, the biggest risk factor that influences the development of spina bifida is a deficiency in levels of folate (folic acid), also known as vitamin B9.1

Other risk factors that can influence the development of spina bifida include:1

Alcohol use
Caffeine use
Smoking
Low levels of methionine, choline, zinc, vitamin B12, and vitamin C
Infections or illnesses during pregnancy
Diabetes
Obesity
Stress
Toxin exposure during pregnancy

Diagnosis of spina bifida can often be made before birth through an ultrasound, blood work, or an amniotic fluid sample.3

How Spina Bifida Affects Children

Symptoms of spina bifida in children will vary based on the severity of the condition. Both physical and cognitive impairments may be present. While some children can walk with little physical impairment, others will require specialized equipment like braces, assistive devices like walkers or crutches, and wheelchairs to help them get around.1

The most common and most severe form of spina bifida, myelomeningocele, often causes motor and sensory problems, including:

Leg weakness
Paralysis
Lack of sensation
Urinary and fecal incontinence
Chiari malformation type 2 (causes the brain to bulge into the skull, creating pressure on the brain)
Hydrocephalus (fluid buildup in the brain)

Orthopedic problems can also result, including clubfoot, muscle contractures, hip dislocation, and scoliosis.1

Because mobility allows children to explore and interact with their environment, which improves their cognitive and psychosocial development, children with spina bifida who have physical limitations can have limited social skills. Children with spina bifida may also have difficulty socializing and making friends and depend more on adults for everyday activities. Children may also experience decreased performance in school and daily tasks at home.1

While most children with spina bifida can perform activities of daily living (ADLs) independently, including getting dressed and following routines, they tend to lag behind their typically developing peers by two to five years.4

How Spina Bifida Affects Adults

People with spina bifida can generally live well into the adult years but tend to be less prepared to live independently. People with spina bifida may need more assistance caring for their health, especially in preventing comorbidities and complications like skin breakdown, renal dysfunction, urinary tract infections, and bladder and bowel incontinence.4

What Does Spina Bifida Treatment Involve?

Treatment for spina bifida involves a comprehensive approach among different healthcare providers. It traditionally requires surgery, followed by other treatment options to manage any lingering complications from spina bifida.

Children with spina bifida are often referred to a physical therapist to assist with physical development and walking ability. A physical therapist can also help treat orthopedic conditions such as clubfoot, scoliosis, and muscle contractures that can develop from spina bifida.

If bowel and bladder problems are present, early treatment soon after birth typically is initiated to promote normal functioning. Regular follow-ups with a renal specialist, with treatment sometimes requiring medication or surgery, is also typical to monitor the kidneys to prevent renal failure.1

Surgery to Repair Spina Bifida Defect

Surgery is often needed for many cases of spina bifida. Depending on the severity of spina bifida and when it is diagnosed, surgery can be performed either before or soon after birth.3

Prenatal surgery, or surgery before birth, involves operating on an unborn fetus in the womb, with access through the mother’s abdomen. During prenatal surgery, stitches will be used to close the opening in the baby’s spinal cord and protect it from further damage.3

Compared to postnatal surgery (surgery after the baby is delivered), prenatal surgery has been associated with improved outcomes for the baby, including decreased risks of fluid around the brain, mobility limitations, and difficulty with walking. While prenatal surgery cannot reverse damage to the spinal cord that may already have occurred, it can prevent further damage.3

Postnatal surgery, or surgery after birth, will typically occur within the first 48 hours after birth if prenatal surgery was not performed. Postnatal surgery involves surgically closing the spinal cord's opening with stitches along the baby’s back.3

It is common for people with spina bifida to develop hydrocephalus (increased fluid around the brain). To treat hydrocephalus, additional surgery is most often needed to place a shunt in the head that helps drain fluid from the brain to the spinal cord.1

Mobility Support for Spina Bifida Patients

More severe forms of spina bifida can permanently damage the spinal cord and nerves that control the lower body. Working with a physical therapist can help maximize a child’s independence with walking and daily movements.

Depending on the physical limitations present, braces and/or assistive devices like walkers, crutches, or wheelchairs may be needed to help a child get around. Starting physical therapy early can help improve healthy physical development and maximize a child’s potential for independent mobility.

Steps to Take in Pregnancy to Prevent Spina Bifida

Maintaining adequate levels of folate (folic acid) is one of the most important steps to preventing spina bifida. If you are pregnant or may become pregnant, it is recommended that you consume 400 micrograms (mcg) of folic acid every day.5

Folic Acid Regulation

Mandatory fortification of cereal grain products with folic acid began in the United States in January 1998. This change has reduced the prevalence of neural tube disorders like spina bifida by approximately 25%.1

Copp AJ, Adzick NS, Chitty LS, Fletcher JM, Holmbeck GN, Shaw GM. Spina bifida. Nat Rev Dis Primers. 2015 Apr 30;1:15007. doi: 10.1038/nrdp.2015.7.

Avoiding or reducing risk factors of spina bifida during pregnancy can also help with prevention. Avoiding exposure to toxins and harmful chemicals like smoke, caffeine, and alcohol can help decrease the risk of a baby being born with spina bifida. Managing a healthy weight and blood sugar levels can also reduce the risk of obesity and diabetes, risk factors associated with spina bifida.1

Spina Bifida Support for Parents and Caretakers

Living with spina bifida or supporting a friend or family member with the condition can come with its own challenges. Resources like the Spina Bifida Association can help provide support for parents, caretakers, and patients with spina bifida. Its website offers helpful educational resources, support group information, access to healthcare providers, and advocacy and research opportunities.

Self-Care With Spina Bifida

People with spina bifida may be more prone to developing complications that can negatively impact their health. It's understandable to feel anxious about this, but people with spina bifida can still live fulfilling lives.6 Staying up-to-date with your healthcare visits and following healthy lifestyle practices, like getting regular exercise and eating a healthy diet, can help prevent complications.

Summary

Spina bifida is a type of neural tube defect that affects the normal development of the spine and spinal cord. Spina bifida usually is genetic but can also develop due to a deficiency of folate or exposure to toxins during development. The usual treatment for spina bifida is surgery, either before or shortly after birth, to close the opening in the spinal cord and protect it from further damage.

Cases of spina bifida can vary in severity, with more serious cases leading to significant motor and sensory loss. Children and adults may lag behind their peers in social development, but can live fulfilling lives with proper medical treatment and support from friends and family. While spina bifida is not progressive, complications like renal failure, urinary tract infections, and hydrocephalus can affect a person's life expectancy if they are not properly managed and treated.

Sources

Copp AJ, Adzick NS, Chitty LS, Fletcher JM, Holmbeck GN, Shaw GM. Spina bifida. Nat Rev Dis Primers. 2015 Apr 30;1:15007. doi: 10.1038/nrdp.2015.7.

Centers for Disease Control and Prevention. What is spina bifida?

National Institute on Neurological Disorder and Stroke. Spina bifida.

Logan LR, Sawin KJ, Bellin MH, Brei T, Woodward J. Self-management and independence guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13(4):583-600. doi: 10.3233/PRM-200734

Centers for Disease Control and Prevention. Facts about neural tube defects.

Centers for Disease Control and Prevention. Living with sppina bifida: Toddlers and preschoolers.