Key points

• Spina bifida is a condition that affects the spine and is usually apparent at birth.
• It can happen anywhere along the spine if the neural tube does not form properly or close all the way.
• The severity of spina bifida can range from mild to severe.

What it is

Spina bifida is a condition that affects the spine. It is usually apparent at birth. It is a type of neural tube defect (NTD).

Spina bifida can happen anywhere along the spine if the neural tube does not form properly or close all the way. When the neural tube doesn't close all the way, the backbone that protects the spinal cord doesn't form and close. This often results in damage to the spinal cord and nerves.

Did you know?‎

About 1 in 2875 babies is born with spina bifida in the US each year.

Types

The three most common types of spina bifida include spina bifida occulta, meningocele, and myelomeningocele.

Myelomeningocele

(sounds like: my-low-ma-nin-jo-seal)

When people talk about spina bifida, most often they are referring to myelomeningocele. Myelomeningocele is the most serious type of spina bifida. With this condition, a sac of fluid comes through an opening in the baby's back. Part of the spinal cord and nerves are in this sac and are damaged. This type of spina bifida causes moderate to severe disabilities, such as not being able to move the legs.

Meningocele

(sounds like: ma-nin-jo-seal)

Meningocele happens when a sac of fluid comes through an opening in the baby's back. But, the spinal cord is not in this sac. There is usually little or no nerve damage. This type of spina bifida can cause minor disabilities.

Spina bifida occulta

(sounds like: o-cult-tuh)

Spina bifida occulta is the mildest type of spina bifida and usually does not cause disabilities. It is sometimes called "hidden" spina bifida. With it, there is a small gap in the spine, but no opening or sac on the back. The spinal cord and the nerves usually are normal. Many times, spina bifida occulta is not discovered until late childhood or adulthood.

Risk factors

We do not know all the causes of spina bifida. The role that genetics and the environment play in causing spina bifida needs to be studied further.

Research studies have reported some factors that might increase the chance of having a baby with spina bifida:

• Not getting enough folic acid daily
• Certain medications
• Diabetes that is not well-controlled
• Overheating or fever

Screening and diagnosis

Spina bifida can be diagnosed during pregnancy or after the baby is born. Spina bifida occulta might not be diagnosed until late childhood or adulthood or might never be diagnosed.

During pregnancy

During pregnancy there are screening tests (prenatal tests) to check for spina bifida and other birth defects. For example, an AFP (alpha-fetoprotein) test might be part of a test called the “quad screen.” A high level of AFP might mean that a baby has spina bifida. Frequently, spina bifida can be seen with an ultrasound, which is a type of picture of the baby.

After the baby Is born

In some cases, spina bifida might not be diagnosed until after the baby is born. Sometimes there is a hairy patch of skin or a dimple on the back that is seen after birth. A doctor can use an image scan, such as an X-ray, to get a clearer view of the baby's spine.

Treatment and management

Not all people born with spina bifida have the same needs, so treatment will be different for each person. Some people have problems that are more serious than others.

Because spina bifida involves the nerves of the spine, children have neurological, orthopedic, urological, and sometimes other needs. Most children's hospitals have special clinics for babies, children, and sometimes adults with spina bifida. These clinics include specialists to treat all the body systems impacted by spina bifida. If you aren't referred to one, it might be helpful to ask your baby's pediatrician about how you can find one.

Treating spina bifida during the pregnancy

Some scientists think that the impact of spina bifida to the legs, bladder and bowel may begin during pregnancy. Therefore, closing the opening in the back during pregnancy may reduce long-term disability associated with spina bifida. The Management of Myelomeningocele Study (MOMS) looked at infants who had this surgery before 26 weeks of pregnancy. This landmark study found that closing spina bifida during pregnancy can:

• Decrease the risk of death in infancy from spina bifida
• Decrease the need for shunting by the end of the first year of life
• Improve motor function in childhood

This treatment does not come without risks, including problems with the placenta and infection. The rate of death in the first year of life ranged from 0-20%. But, most reports show rates in the 2-6% range.

Living with spina bifida

Spina bifida can range from mild to severe. Some people may have little to no disability. Other people may be limited in the way they move or function. Some people may even be paralyzed or unable to walk or move parts of their body. The severity depends on:

• The size and location of the opening in the spine.
• Whether part of the spinal cord and nerves are affected.

At a glance

• No two people with spina bifida are exactly alike.
• Health issues for people with spina bifida will be different for each person.
• Finding resources, knowing what to expect, and planning for the future can help.

Everyday life

Mobility

People affected by spina bifida get around in different ways. These include walking without any aids or assistance; walking with braces, crutches or walkers; and using wheelchairs.

People with a level of spina bifida higher on their spine (near the head) might have paralyzed legs and use wheelchairs. hose with a level of spina bifida lower on their spine (near their hips) might have more use of their legs. They might use crutches, braces, or walkers, or they might be able to walk without these devices.

Using the bathroom

People with spina bifida often cannot control when they go to the bathroom (incontinence). They also can develop urinary tract infections.

Skin

Children and adults living with spina bifida may have limited feeling in some areas of their body. This can leave them unable to feel cuts, bruises, sores, and dry skin. Since a person with spina bifida may not know they've been hurt, they may be unable to tell a parent or caregiver that they need help.

Other potential health issues

Some people with spina bifida have difficulty with:

• Learning
• Relating to others
• Vision
• Staying at a healthy weight
• Depression

Taking care of yourself or loved ones

Physical activity

Regular physical activity is important for all people, but especially for those with conditions that affect movement, such as spina bifida. CDC recommends 60 minutes of physical activity a day. There are many ways for people with spina bifida to be active. For example, they can:

• Engage in active play with friends.
• Roll or walk in the neighborhood.
• Participate in community programs, which are often free in many communities.
• Enjoy recreation areas with accessible playgrounds.
• Do exercises recommended by a physical therapist.
• Attend summer camps that are accessible for those with disabilities.
• Participate in sports and teams for people with or those without disabilities.

Bathroom plan

It is important to develop a plan for going to the bathroom that works and is as simple as possible. This can lead to increased health, participation, and independence for people with spina bifida. Healthcare providers can help develop a plan for each person. A tube (catheter) inserted in the bladder can help drain urine. In some cases, extra fiber can be added to the diet to keep bowel movements regular. Surgery also might be recommended.

Skin care

Checking skin regularly for redness, including under braces, is important for people with spina bifida and their parents and caregivers to identify skin problems before they become pressure sores.

• Avoid hot bath water, heaters, hot dishes, hot car seats, and metal seatbelt clasps since they may cause burns.
• Make sure you are always wearing properly fitting shoes, even when swimming.
• Use sunscreen, and don't stay out in the sun too long.
• Do not sit or lie in one position for too long.

Latex (natural rubber) allergy

Many people with spina bifida are allergic to products that contain latex, or natural rubber. This means they should not use items made of natural rubber. For babies, this would include rubber nipples and pacifiers. A person with this type of allergy can wear a bracelet to alert other people of the allergy.

Talking to your doctor

Every person needs a primary care provider, such as a pediatrician or general family doctor. In addition to seeing a primary health care provider, a person with spina bifida will be checked and treated as needed by doctors who specialize in different parts of the body. These doctors might suggest treatments or surgeries to help the person.

These specialists might include:

• An orthopedist, who will work with muscles and bones.
• A urologist, who will check the kidneys and bladder.
• A neurosurgeon, who will check the brain and spine.

What to know

• Understanding health issues and treatments for infants with spina bifida can help parents and caregivers make the best possible choices for their child.
• Each child and their needs will evolve as they grow and develop.
• Care during infancy is typically focused on treating problems that can worsen their condition or identifying if the condition is changing.

Learning about spina bifida

When parents find out they are going to have a child with spina bifida, it can be overwhelming. It's important that they know that most children born with spina bifida reach their full potential.

It may be helpful for parents and caregivers to understand the health issues and treatment options to make the best possible choices for their baby. If you're caring for a baby with spina bifida,

• Talk with a health care provider about questions or concerns you have.
• Learn about spina bifida.

Finding support‎

Having support and community resources can help increase confidence in managing spina bifida, enhance quality of life, and assist in meeting the needs of all family members.

Physical health

No two babies with spina bifida are exactly alike. Each child's condition will evolve as they grow and develop. Some babies have health issues that are more severe than other babies.

Most of the focus of care in infancy is on:

• Treatment of problems that worsen the condition.
• Diagnostic testing to identify when the condition may be changing.

Myelomeningocele

When a baby is born with myelomeningocele (called open spina bifida), the spinal cord is exposed. Doctors perform surgery to close it. Surgery can happen before birth or within the first days of the baby's life.

Hydrocephalus

Many babies born with spina bifida get hydrocephalus (called water on the brain). This is caused by brain fluid not appropriately draining through the natural channels in the brain and spinal cord. This results in extra fluid in and around the brain. The extra fluid can cause the spaces in the brain, called ventricles, to become too large, and the head can swell. Hydrocephalus needs to be followed closely and treated properly to prevent brain injury.

If a baby with spina bifida has hydrocephalus, a neurosurgeon can put in a shunt. A shunt is a small hollow tube. When placed, it drains fluid from the baby's brain and protects it from too much pressure.

The most common route a shunt can take is from the brain into the abdominal cavity (ventriculoperitoneal shunt). However, shunts can also drain into the heart or other structures. Additional surgery might be needed to adjust the shunt as the child grows up. Surgery may also be needed if it breaks or becomes clogged or infected.

Guidelines

Mobility and physical activity

Doctors can start treatment for movement problems soon after a baby with spina bifida is born. A physical therapist can work with caregivers to teach them how to exercise a baby's legs to increase strength and flexibility. Specialized orthotics technologists can fit a baby with braces. These can help a baby's legs develop without curvature and support them as they begin to crawl and walk.

Regular physical activity is important for all babies, especially for those with conditions that affect movement, such as spina bifida. There are many ways for babies with spina bifida to be active. For example, they can:

• Play with toys, such as activity mats.
• Enjoy parks and recreation areas.
• Participate in community programs, which are free in many communities.
• Do exercises recommended by a physical therapist.

Skin

Babies with spina bifida can develop sores, calluses, blisters, and burns on their feet, ankles, and hips. Many cannot feel their skin below the level of their spina bifida. Because of this, babies will not feel and react to pain in that part of their body. Parents and caregivers can help protect the baby's skin by:

• Checking the baby's skin daily for redness, including under braces.
• Avoiding hot bath water.
• Avoiding hot or unpadded seatbelt clasps that may cause burns.
• Making sure the baby doesn't stay in the sun too long.
• Making sure the baby isn't sitting/lying in one position for too long.

Latex allergy

Many babies with spina bifida can develop sensitivity to products that contain latex, or natural rubber. Signs of latex reaction can range from skin rashes/redness to breathing difficulties.

Babies with this allergy should not use items made of natural rubber (“latex”). This would include rubber nipples and pacifiers. The baby can wear a bracelet to alert other people of the allergy. Parents and caregivers should discuss this with their baby’s health care providers.

What you can do

Every baby needs a primary health care provider, like a pediatrician, family doctor, or nurse practitioner. The primary health care provider will want to make sure that the baby is healthy, developing normally, and receiving immunizations. The primary provider may also help the child and family receive enhanced access to therapy and educational assistance.

Shortly after birth, doctors specializing in different body systems impacted by spina bifida will check and begin care of the baby.

These specialists might include:

• An orthopedist, who will work with the baby's muscles and bones.
• A urologist, who will check the baby's kidneys and bladder.
• A neurosurgeon, who will check the baby's brain and spine.

What to know

• Understanding health issues and treatments for toddlers with spina bifida can help parents and caregivers make the best possible choices for their child.
• For toddlers with spina bifida, focus on encouraging their independence, supporting their mobility and physical health, protecting their skin, and regularly seeing their healthcare team.

Encouraging independence

Young children experience huge mental, social, and emotional changes. They have a lot of energy and enthusiasm for exploring and learning about their world and becoming independent. Developing independence can be especially challenging for children with spina bifida. Parents should start helping their child develop independence early in childhood.

For toddlers and preschoolers with spina bifida, there are many ways that caregivers can help them become more active and independent:

• Teach the child about his or her body and about spina bifida.
• Encourage the child to make choices.
• Ask the child to help with daily tasks.

Children with spina bifida might need extra help at times. But it is very important that children be given the opportunity to complete a task before help is given. It is also important that parents give only the help that is needed rather than helping with the entire task. Parents should ensure tasks can reasonably be completed and provide enough help to increase their child's independence and confidence.

Health effects

No two children with spina bifida are exactly alike. Health issues will be different for each child. Some children have issues that are more severe than other children. With the right care, children born with spina bifida will grow up to reach their full potential.

Mobility

Children affected by spina bifida get around in different ways. These include walking without any aids or assistance; walking with braces, crutches or walkers; and using wheelchairs.

Children with a higher level of spina bifida (near the head) might have paralyzed legs and use wheelchairs. Those with a lower level of spina bifida might have more use of their legs and use crutches, braces, or walkers. They might also be able to walk without these devices.

Using the bathroom

Children with spina bifida often cannot control when they go to the bathroom (incontinence). They can also develop urinary tract infections.

Skin

Children with spina bifida can develop sores, calluses, blisters, and burns on their feet, ankles, and hips. However, they might not know when these develop, because they might not be able to feel in certain areas of their body. In addition, toddlers might not know how to tell their parents about issues with their skin.

Guidelines

Physical activity

Regular physical activity is important for all children, but especially for those with conditions that affect movement, such as spina bifida. There are many ways for children with spina bifida to be active. For example, they can:

• Engage in active play with friends.
• Roll or walk in the neighborhood.
• Enjoy parks and recreation areas with accessible playgrounds.
• Participate in community programs for children with disabilities.
• Do exercises recommended by a physical therapist.

A physical therapist can teach children and caregivers how to exercise the child's legs to increase strength and flexibility.

Bathroom plan

It is important to develop a plan for going to the bathroom that works and is as simple as possible. This can lead to increased health, participation, and independence at school and at home, and avoid embarrassment for children with spina bifida.

Healthcare providers can help develop a plan for the child. A tube (catheter) inserted in the child's bladder can help drain urine. In some cases, extra fiber can be added to the diet to keep bowel movements regular. Surgery also might be recommended.

Skin

Parents and caregivers can help protect the child's skin and teach the child how to do this, too, by:

• Checking the child's skin daily for redness, including under braces.
• Avoid hot bath water and seatbelt clasps that may cause burns.
• Always making sure the child wears properly fitting shoes.
• Using sunscreen and ensuring the child doesn’t stay long in the sun.
• Making sure the child isn't sitting/lying in one position for too long.

What you can do

Regular health checks

Every child needs a primary health care provider (for example, a pediatrician, family doctor, or nurse practitioner). In addition, doctors who specialize in different body systems will check and treat a child with spina bifida. These doctors might suggest treatments or surgeries to help the child. These specialists might include:

• An orthopedist, who will work with the child's muscles and bones.
• A urologist, who will check the child's kidneys and bladder.
• A neurosurgeon, who will check the child's brain and spine.

Safety

Safety is an important issue for children with spina bifida. They can be at higher risk for injuries and abuse. Caregivers should teach them how to stay safe and what to do if they feel threatened or in harm's way.

What to know

• School-aged children with spina bifida may have different health needs and school-related issues.
• Work with your school and healthcare team to help children with spina bifida get the support and care they may need.

School

Many children with spina bifida do well in school. But some can experience difficulties, especially children with shunts that are used to treat hydrocephalus (or water on the brain). These children often have problems with learning and may have trouble making decisions. They might have difficulty paying attention or work slowly, be restless, or lose things. Healthcare professionals can provide information about activities that children can do at home and at school to help with these problems.

Individualized Education Plan (IEP)

An Individualized Education Plan is important because it can help children develop skills at school. Children who participate in special education classes will have an IEP. An IEP is a legal document that lets the school know what kinds of assistance a child may need at school. An IEP is created by parents and school personnel. This can include a psychologist, teachers, a school nurse, a physical education teacher, and other professionals.

504 Plan

If a child does not qualify for an IEP, parents can request a 504 Plan be developed for their child. Usually, a 504 Plan is used by a general education student who is not eligible for special education services. By law, children may be eligible to have a 504 Plan which lists accommodations related to a child's disability.

The 504 Plan accommodations can give the child an opportunity to perform at the same level as their peers. For example, a 504 Plan may include the child's assistive technology needs, such as a tablet or laptop to take notes. It may also ensure they have a wheelchair accessible environment at school.

Encouraging independence

Starting school brings children into regular contact with the larger world. Friendships become important and physical, social, and mental skills develop rapidly during this time.

This is an important time for children to become more responsible and independent. It's also a good time to start exploring interests such as hobbies, music, or sports. Developing independence can be challenging for people affected by spina bifida. It is important to begin working on this process early in childhood.

Health effects

Physical health

No two children with spina bifida are exactly alike. Some children have issues that are more severe than other children. Children with a higher level of spina bifida (near the head) might have paralyzed legs and use wheelchairs. Those with a lower level of spina bifida might have more use of their legs and use crutches, braces, or walkers. They might also be able to walk without these devices.

Using the bathroom

Children with spina bifida often cannot control when they go to the bathroom (incontinence) and can develop urinary tract infections.

Skin

Children with spina bifida can develop sores, calluses, blisters, and burns on their feet, ankles, and hips. However, they might not know when these develop because they might not be able to feel certain areas of their body.

Guidelines

Physical activity

Regular physical activity is important for all children, but especially for those with conditions that affect movement, such as spina bifida.

CDC recommends 60 minutes of physical activity a day. There are many ways for children with spina bifida to be active. For example, they can:

• Engage in active play with friends.
• Roll or walk in the neighborhood.
• Enjoy parks and recreation areas with accessible playgrounds.
• Attend accessible summer camps and recreational facilities.
• Participate in sports for people with or without disabilities.

A physical therapist can teach children and caregivers how to exercise the child's legs to increase strength and flexibility.

Bathroom plan

It is important to develop a plan for going to the bathroom that works and is as simple as possible. Healthcare providers can help develop a plan for the child. A tube (catheter) inserted in the child's bladder can help drain urine. In some cases, extra fiber can be added to the diet to keep bowel movements regular. Surgery also might be recommended.

Protecting skin

Parents and caregivers can help protect the child’s skin and teach the child how to do this, too, by:

• Checking the child's skin daily for redness, including under braces.
• Avoid hot bath water and seatbelt clasps that may cause burns.
• Always making sure the child wears properly fitting shoes.
• Using sunscreen and ensuring the child doesn’t stay long in the sun.
• Ensuring the child is not sitting/lying in one position for too long.

Latex allergy

Many children with spina bifida are allergic to products that contain latex, or natural rubber. This means they should not use items made of natural rubber. A child with this type of allergy can wear a bracelet to alert other people of the allergy.

What you can do

Regular health checks

Every child needs a primary health care provider (for example, a pediatrician, family doctor, or nurse practitioner). In addition, a child with spina bifida will be checked and treated by doctors specializing in different body systems. These doctors might suggest treatments or surgeries to help the child. These specialists might include:

• An orthopedist, who will work with the child's muscles and bones.
• A urologist, who will check the child's kidneys and bladder.
• A neurosurgeon, who will check the child's brain and spine.

Safety

Safety is an important issue for children with spina bifida. They can be at higher risk for injuries and abuse. As they become more independent, caregivers should teach them how to stay safe and what to do if they feel threatened.

What to know

• Adolescents and teens with spina bifida may have different needs that can be supported through the assistance of professionals in physical and mental health.
• As adolescents and teens with spina bifida grow, they will start taking active steps toward independence and perform more and more activities themselves.

Encouraging independence

Many physical, mental, emotional, and social changes are associated with the adolescent and teen years. Teens and adolescents develop their own personalities and interests and want to become more independent.

This transition period can be challenging, especially for people affected by spina bifida. Caregivers of adolescents and teens with spina bifida should take active steps toward encouraging independence starting in childhood. In this way, by the time they are older they can develop the necessary skills to reach their full potential.

As people with spina bifida mature, they will perform more and more activities themselves. Most teens will dress and bathe themselves, manage their bathroom plans, and move about independently in their homes and communities. They might begin to make their own doctor appointments. They will continue to participate in updating their own Individualized Education Plan (IEP) or 504 Plan, if they have one.

Finding support‎

Having support and community resources can help increase confidence in managing spina bifida, enhance quality of life, and assist in meeting the needs of all family members.

Looking to the future

Teens with spina bifida and their families should begin planning for life after high school. This includes:

• Looking for doctors that treat adults with spina bifida.
• Deciding where the person with spina bifida will live.
• Choosing work.
• Exploring college or vocational school opportunities.
• Volunteering in the community.
• Having healthy relationships.

Planning early can help make the years ahead easier.

Prepare for the transition from pediatric to adult health care‎

AAP and CDC developed educational videos that highlight key timelines for families and ways to prepare.

Health effects

Mobility

People with a higher level of spina bifida (near the head) might have paralyzed legs and use wheelchairs. Those with a lower level of spina bifida might have more use of their legs and use crutches, braces, or walkers. They also might be able to walk without these devices. A physical therapist can work with adolescents and teens to teach them how to exercise their legs to increase strength, flexibility, and movement.

Sexual health

Spina bifida causes nerve damage that can affect sexual functioning. Most people with spina bifida are fertile and can have children.

Mental health and well-being

Overall mental health and well-being are very important for everyone. Mental health is how people think, feel, and act as they cope with life. To be at their best, people need to feel good about their lives and value themselves.

Teens and adolescents with spina bifida might feel isolated from others or have low self-esteem. This can cause them to become depressed. There are different ways to treat depression. Exercise can be effective. Counseling or medication also might be needed. Participating in peer support groups can also help.

Guidelines

Physical activity

Regular physical activity is important for all adolescents, but especially for those with conditions that affect movement, such as spina bifida. CDC recommends 60 minutes of physical activity a day. There are many ways for teens and adolescents with spina bifida to be active. For example, they can:

• Engage in physical activities with friends.
• Roll or walk in the neighborhood.
• Lift weights.
• Participate in sports for people with and without disabilities.
• Attend accessible summer camps and recreational facilities.

Wheelchair evaluation

Teens and adolescents with spina bifida should participate in a seating or wheelchair evaluation at least once each year if they use a wheelchair. This evaluation will make sure the wheelchair fits correctly and makes moving as easy as possible.

Sexual health

Caregivers can encourage adolescents with spina bifida to talk with their healthcare professional about sexuality, sexual functioning, contraceptives, and reproductive concerns.

Folic acid

Folic acid is very important. Taking enough folic acid before and during pregnancy can help prevent major birth defects of the brain and spine―including spina bifida. If planning to get pregnant, a person with spina bifida should consider getting a prescription for 4,000 micrographs (mcg) of folic acid. This should be taken one month before pregnancy and during early pregnancy.

Mental health

Everyone feels worried, anxious, sad, or stressed sometimes. If these feelings don't go away and interfere with daily life, young adults should talk with other people about their feelings. This can include a family member, school counselor, or healthcare professional. Depression and other mental health concerns can be treated.

If you have questions about mental health or getting mental health services, speak with your doctor or licensed mental health professional. A nearby health facility or your state mental health agency also may be able to help.

What you can do

Safety

Safety is important for adolescents and teens with spina bifida. They can be at higher risk for injuries and abuse. It is important to learn how to stay safe and what to do if they feel threatened or have been hurt.

Getting around

Being safely mobile in their homes and communities will help adolescents and teens become more independent. To do this, they will need to find and use safe transportation.

Many teens with spina bifida have issues that can affect safe driving. A driver rehabilitation evaluation specialist can identify these issues and whether modifications to the car would make it more accessible.

Parents and caregivers can also help teens learn to safely use buses, cabs, and ride-hailing services.

What to know

• About half of all people living with spina bifida in the United States are adults.
• Young adults with spina bifida may have complex needs that can be supported through coordinated care from a multidisciplinary team of healthcare professionals.

Supporting independence

The transition from adolescence to adulthood can be a time of growth and success, as well as difficulty. Young adults affected by spina bifida can face challenges, such as:

• Learning to take care of their own health needs.
• Working.
• Going to school.
• Volunteering.
• Finding and using transportation.
• Living outside their parents' home.
• Developing healthy relationships.

Many young adults are still getting used to being independent. They may have recently started working, volunteering, going to college, or living independently.

Continuing to plan for the future is very important. This includes setting goals and planning how to achieve them. Unexpected problems can be challenging and it's important for young adults to not give up and to keep working towards their goals. Sometimes the goals need to be modified, or they take longer than planned. Either way, planning now will help young adults with spina bifida continue to succeed.

Health effects

Physical health

Young adults with spina bifida can provide or manage much of their own care. Some examples include:

• Finding new doctors that care for adults affected by spina bifida.
• Obtaining medical insurance.
• Talking to health care professionals about their condition.
• Making doctor appointments.
• Ordering or reordering medications and supplies.
• Seeking immediate medical help when needed.
• Managing their own bathroom plan.

Sexual health

Spina bifida causes nerve damage that can affect sexual functioning. Most people with spina bifida are fertile, and can have children.

Mental health

Overall mental health and well-being are very important for everyone. Mental health is how people think, feel, and act as they cope with life. To be at their best, people need to feel good about their lives and value themselves.

Young adults with spina bifida might feel isolated from others or have low self-esteem. This can cause them to become depressed. There are different ways to treat depression. Exercise can be effective. Counseling or medication also might be needed. Participating in peer support groups can also help.

Guidelines

Physical activity

Regular physical activity is important for all people, but especially for those with conditions that affect movement, such as spina bifida. CDC recommends 60 minutes of physical activity a day. There are many ways for people with spina bifida to be active. For example, they can:

• Roll or walk in the neighborhood.
• Lift weights.
• Participate in sports activities or teams.

Sexual health

It is important that young adults with spina bifida talk with their healthcare professional about sexuality and sexual functioning, contraceptives, and reproductive concerns.

Folic acid

Folic acid is very important. Taking enough folic acid before and during pregnancy can help prevent major birth defects of the brain and spine―including spina bifida. If planning to get pregnant, a person with spina bifida should consider getting a prescription for 4,000 micrograms (mcg) of folic acid. This should be taken one month before pregnancy and during early pregnancy.

Mental health

Everyone feels worried, anxious, sad or stressed sometimes. If these feelings do not go away or interfere with daily life, adults should talk with other people about their feelings. This can include a family member or health care professional.

If you have questions about mental health or getting mental health services, speak with your doctor or licensed mental health professional. They may be able to answer those questions or refer you to someone who can. A nearby health facility or your state mental health agency also may be able to help.

What you can do

Getting around

To be independent, young adults need to be able to find and use transportation safely. Many young adults with spina bifida have issues that can affect safe driving. A driver rehabilitation evaluation specialist can identify whether modifications to the car would make it more accessible.

Young adults can also learn to find and safely use buses, cabs, and ride-hailing services. As they plan for employment, college, or vocational training, young adults will need to find and use transportation safely.