Life with a child with Spina Bifida is filled with many emotions –  joy, love, worry, exhaustion, and, of course, many questions.

Meeting the complex needs of a person affected by spina bifida involves the whole family and can be challenging at times. Finding resources, knowing what to expect, and planning for the future can help.

Newborn to Age 2

Congratulations on the birth of your baby! Whether you are a brand new or a seasoned parent, you probably have lots of questions about raising a child with Spina Bifida. Having a baby with Spina Bifida will take you down a different path than originally planned. While sometimes you may feel guilt, anger, and sadness; at other times you will experience moments of great joy, as you celebrate the multiple accomplishments of your child.

Every child with Spina Bifida is different. In most cases, except for learning a few special medical procedures, caring for your little one with Spina Bifida will be much like caring for any infant. Your doctor and nurses will give you specific instructions for the care of your child before you take him/her home.

It is difficult to predict at this stage what your baby will eventually be able to do. Your loving attitude toward your baby and the realistic expectations you set as he/she grows will help your child develop a positive image of himself/herself. Treat your child, as much as possible, as you would treat a child without Spina Bifida. Spend lots of time smiling, cuddling, hugging, kissing, and holding each other. Look at books together, listen and respond to your child’s cues. Learn all you can about your child’s wants and needs and have fun together.

It is very important for parents to take an active role in managing their child’s care. Parents need to know about spina bifida and understand the health issues and treatment options to make the best possible choices for the health and happiness of their child.

• Parents should talk with a health care provider about any questions or concerns they have.
• Parents can start learning about spina bifida by reading CDC’s Basics and Health Issues and Treatments spina bifida pages.

Children ages 3 to 5

The preschool and early school-age years can be rewarding and exciting for your child. He or she will be exposed to many new concepts and activities. Just like other children, there will be some things your child will do well and other things that he or she will do that require more help. The important thing is to make sure that the tasks that are within your child’s ability are done independently. Sometimes you might be tempted to help, just because you can, or because it would be quicker, but the more your child performs a task, the better and faster he or she will be able to complete it independently.

Success will motivate your child to keep trying. Your loving attitude toward your child and the realistic expectations you set will help him or her to develop a positive self-image. However, keep in mind at this stage, it is difficult to predict your child’s abilities. Remember, services are available for your child according to his or her needs. If your child struggles with basic dressing or grooming, an occupational therapist can help find alternate ways for your child to do basic things. A physical therapist can help with mobility issues. Provide your child with lots of opportunities to play with other children, so he/she can learn social skills.

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

• Teaching the child about his or her body and about spina bifida.
• Encouraging the child to make choices, such as between two items of clothing.
• Asking the child to help with daily tasks, such as putting away toys.

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 must learn the difficult balance between giving the right amount of help to increase their child’s independence and confidence, while at the same time being careful not to give the child tasks that cannot reasonably be completed―which might decrease their child’s confidence.

Children ages 6 to 9

The school-age years can be a challenge for any parent.  These years can be rewarding and exciting for your child. He or she will be exposed to many new concepts and activities. Just like other children, there will be some things your child will do well and other things that he or she will do that require more help. The important thing is to make sure that the tasks that are within your child’s ability are done independently. Sometimes you might be tempted to help, just because you can, or because it would be quicker, but the more your child performs a task, the better and faster he or she will be able to complete it independently. Success will motivate your child to keep trying. Your loving attitude toward your child and the realistic expectations you set will help him or her to develop a positive self-image.

This is an important time for children to become more responsible and independent. This is also a good time to start exploring potential lifetime 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.

Children ages 10 to 12

Continue to encourage your child to live up to the goals you have set together. It is always difficult to be an adolescent. Moodiness and occasional outbursts can be expected. An adolescent with Spina Bifida will have additional challenges to face. A child tends to live up to the expectations held by parents and teachers. Your child may need more help and more time, but having a successful, confident, and happy child is the ultimate goal. Success will motivate your child to keep trying. Just like other children, there will be some things your child will be good at and other things that he or she will need help with. Remember services are available for your child depending on his or her needs. All parents have dreams for their children. Remain optimistic. Have realistic expectations of your child.