Raising a child with spina bifida comes along with a whole host of emotions — joy, love, worry, exhaustion, and lots and lots of questions. Meeting your child’s myriad needs can be challenging and confusing. As a parent, you probably wish you knew what to expect, which treatment options are available, and how to best plan for your child’s future.

Below, you’ll find some helpful information, which may help you understand your child’s condition.

What is Spina Bifida?

Spina bifida is a birth defect in which an area of the child’s spinal column doesn’t form completely before birth, leaving a section of the spinal cord and nerves exposed. This condition develops during the early stages of pregnancy, typically within the first 28 days.

There are three primary types of spina bifida:

1. Spina Bifida Occulta, often called “hidden spina bifida,” has no visible symptoms and usually does not cause harm.
2. Meningocele causes a sac of nerve fluid to push through the spine. Individuals with this kind of spina bifida typically have minor disabilities.
3. Myelomeningocele is the most severe type of spina bifida, occurring when portions of the spine and its nerves push through the spinal cord. This is the most common type of spina bifida.

Signs and Symptoms of Spina Bifida

The severity of an individual’s symptoms will depend on various factors, such as the size and location of the spinal opening. As a result, individuals with spina bifida can experience a wide range of symptoms and challenges. 

While some people with spina bifida may have noticeable disabilities, other cases can go undetected. Typically, the higher the location of the defect on the spine, the more severe the complications.

Common signs and symptoms of spina bifida include:

• Motor function challenges: People with spina bifida may experience movement and coordination difficulties, typically affecting the legs, and sometimes the entire lower body. Weakness or paralysis of the lower limbs is common among those with more severe cases of spina bifida (i.e., myelomeningocele.
• Bowel and bladder issues: Spina bifida often results in impaired control over bowel and bladder functions.
• Orthopedic complications: Spinal abnormalities can disrupt bone and joint development, leading to deformities such as scoliosis or clubfoot.

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Co-occurring conditions:

• Hydrocephalus: Spina bifida and hydrocephalus often occur together. Hydrocephalus is a condition in which babies retain excess fluid on the brain, which, left untreated, can damage the brain and cause further problems. If this occurs, surgery is often done to insert a shunt which will drain the fluid. 
• Latex allergy in spina bifida: Individuals with spina bifida may develop an allergy to latex; the severity can range from mild to severe.
• Cognitive challenges: Some individuals experience cognitive difficulties, such as learning disabilities, intellectual disabilities, or attention deficits, though the extent of these challenges varies widely.

Today, with the many advancements in medical care, and with proper management of the condition,, people with spina bifida can lead long, fulfilling lives. However, some of the symptoms related to mobility, bladder and bowel control, and cognitive functions may require ongoing support. 

Diagnosing Spina Bifida

Spina bifida occurs in 1 out of 2,000 live births in the United States, making it the most common central nervous system birth defect. It is typically diagnosed during routine prenatal screenings, such as the mid-pregnancy (‘20-week’) anatomy scan. If your doctor suspects spina bifida, additional spina bifida tests may be conducted to confirm the diagnosis. 

However, some mild cases can go unnoticed until after birth, while even milder cases may never be detected.

Is Spina Bifida Curable?

While there’s currently no known cure for spina bifida, there are many treatments and interventions that can minimize damage, and help your child lead a full life.

Medical Interventions

The treatments for spina bifida depend upon the severity of the condition, with less severe cases requiring little to no intervention. However, traditional spina bifida repair treatment is done via surgery— either prenatally or postnatally. Remarkable medical interventions have made prenatal surgery for spina bifida a possibility in some cases, and evidence suggests that prenatal surgery for spina bifida yields better outcomes than postnatal surgery. 

Postnatal surgery is typically performed 24 to 48 hours after birth. During surgery, the surgeon will put the spinal cord and any exposed tissues or nerves back into the correct place and close the gap. Although this will repair the defect, surgery cannot reverse any nerve damage that has already occurred.

In many instances, surgery is also necessary to address hydrocephalus (excess fluid on the brain). Other potential medical interventions include medication, surgery, or insertion of a catheter to address bladder issues. 

Physical Therapies

Physical therapies are a cornerstone of spina bifida management. As weakened control of lower limbs is one of the most typical challenges resulting from spina bifida, consistent physical therapy can do wonders in improving mobility, muscle strength, and coordination. Occupational therapy assists individuals in developing skills for daily living, while speech therapy may be beneficial for those with speech-related challenges.

Psychosocial Interventions

People with spina bifida may face cognitive and intellectual challenges, as well as attention deficits. It’s important to collaborate with educators and professionals to best support your child’s academic success. 

Counseling may also be helpful here to support the individuals as they navigate the challenges that spina bifida presents and address any cognitive or social challenges. 

Throughout the journey, remember this: Every child with spina bifida will experience unique challenges and triumphs., But with your understanding, support, and the right interventions, your child can lead a meaningful and productive life.