Spina Bifida in Children: Care Instructions

Overview

Spina bifida is a condition that begins in early pregnancy where part of the baby's spine does not form completely. That can leave part of the spinal cord uncovered. In minor cases, the spinal cord stays right where it should, and the child is fine. But when the spinal cord bulges outside of the body, it can be damaged. That makes it hard for the brain to send messages to the lower parts of the body. This can cause problems, commonly with walking and bladder control. Some babies with spina bifida also have too much fluid around their brains. This can be treated with surgery.

Spina bifida affects each child differently. Early surgery can reduce nerve damage for some children. Your doctor may use medicine to stop or prevent infection. You may start working with a physical therapist in your baby's first few weeks to learn exercises to make the muscles stronger. As your child grows, you and your doctor will develop a treatment plan to help your child be active. Braces, wheelchairs, and other devices help many children with spina bifida to be active and independent.

How can you care for your child at home?

• Work with your doctor and physical therapist to help your child get strong and learn to control movements better.
• Place your child on their stomach and place toys within reach.
• Move your child's joints through their full range of motion as taught by your doctor or physical therapist. This will make the muscles stronger and prevent injury to the joints.
• Prevent skin infections by looking for cuts, blisters, and sore spots.
• Help your child avoid contact with latex. Children with spina bifida often are allergic to latex. Latex can be in medical gloves and things such as bandages, balloons, and pacifiers. Watch for signs of a reaction, such as sneezing, coughing, itchy eyes, and a rash.

Handling the challenges of spina bifida

• Learn about spina bifida. This will help you figure out how you can help your child.
• Take care of yourself. Get enough rest, eat well, and exercise.
• Help each other. The entire family is affected when a child has spina bifida. You can help family members with their fears and concerns.
• Consider joining a support group. Sharing your experiences with other parents who face similar challenges may help you feel less overwhelmed. Seek counseling if you need help sorting out your emotions.
• Be realistic. Do the best you can and know that you cannot control everything.