Spina Bifida

Your child has been diagnosed as having Spina Bifida. At this time, you may be feeling
concerned, upset, and overwhelmed at the challenges that lie ahead. You will no doubt have
many questions about Spina Bifida and what a child with this condition will mean to you and
your family. In this booklet we will try to answer some of the questions about what Spina
Bifida is and how it is treated. For further information and assistance, please contact Family
Support Services at Grandview Children’s Centre.

What is Spina Bifida?

 Spina Bifida is a birth defect which involves the incomplete development of the
brain, the spinal cord and/or the protective covering of these organs.

Things to remember...

 Spina Bifida occurs in all races, ethnic groups, socioeconomic classes, and
nationalities and in both boys and girls.
 Each child with Spina Bifida is a unique individual, with his/her own
personality, strengths, talents and thoughts.
 Children with Spina Bifida can participate in many community programs such
as sports, arts and crafts, music, scouts, school, etc.

What causes Spina Bifida?

 Spina Bifida results when the spine does not close properly during the first
month of pregnancy.
Is there more than one type?

There are two types of Spina Bifida:

 Meningocele In this case, the spinal cord is not damaged, however, the bones of the
spine (the vertebrae) are split and the covering of the spinal cord (the meninges),
pushes through the vertebrae, causing damage.

 Myelomeningocele The vertebrae are split apart with the spinal cord and the
meninges push through. Hydrocephalus, an accumulation of fluid in the brain, may
also occur with this type of Spina Bifida.

What are some of the characteristics of Spina Bifida?

 Mobility may be affected. How much movement your child has in his/her legs
depends on where the lesion is on the back. The higher the lesion, the lower the
chance is of walking independently.
 Difficulties with bowel and bladder control may occur. This symptom is dependent
on the location of the lesion on the back.
 Other conditions such as latex allergies and possible skin breakdown from lack of
feeling are also associated with Spina Bifida.
 Developmental delays may occur and learning disabilities are possible. These delays
may cause learning problems such as difficulty paying attention, and expressing or
understanding language. Organizing, sequencing, and processing of information in
reading and mathematics may also be affected.

What are the most common types of therapy?

 Occupational Therapy and Physiotherapy are the main therapies needed for children
with Spina Bifida. Occupational Therapists and Physiotherapists will often work as a
team in caring for your child.
 The goal of therapy is to help your child to maximize mobility and to become as
independent as possible at home, in school, and in the community.
 Therapy involves:

 increasing strength, balance, and flexibility through exercise

 preventing orthopaedic problems with exercise and positioning devices
 recommending equipment to help with independence, i.e. walkers, wheelchairs,
bathroom equipment
 modifying household equipment
 increasing independence with Activities of Daily Living (ADL’s) such as dressing,
eating and toileting
 increasing independent use of tools such as scissors, pencils, cutlery, toothbrush,
etc.

How can I help my child?

 Consistent and active treatment is important to your child’s development, so please

make every effort to attend all sessions in a treatment block.
 Become active in your child’s therapy by following through with home programming
and asking questions whenever you have concerns.
 Maintain contact and speak regularly with your child’s health care team
 Keep your child’s team informed of any changes.
 Communicate your concerns and goals for your child with his/her therapists.
 Encourage your child to try new things.
 It is important to provide a strong social support system for your child.
 Being the parent of a child with Spina Bifida requires a lot of attention and energy, so
be sure to take time for yourself and look after your own needs as well.
 Keep in touch with family and friends – seek out their support when needed.
 Take advantage of community resources and services available to you and your child.
 The better informed you are as a parent, the better prepared you will be to get the best
services from medical, educational, and community programs.

If you have any additional questions or needs, please do not hesitate to ask.