Mobility and spina bifida
Doctors may estimate your child’s level of mobility, including their ability to walk, based on the level of their spina bifida.
As you watch your child grow, the chart below will become less relevant to your day to day life as the individuality of your child will matter more. Children and adults will explore their world, they sometimes just need a little bit of extra help.
When you are pregnant and looking for answers, this information is valuable to get a glimpse of what life might look like.
There are many assistive devices (braces, crutches, walkers and wheelchairs, etc.) that will help your child navigate their environment with ease and independence. Movement is effortless for most people and the goal is to provide enough support so that your child can enjoy their life and not use all of their energy for mobility.
An assistive device will allow your child to play with their friends/family and be a child.
Bladder and Bowel Considerations
The nerves at the bottom of the spine also control the bladder and bowels. Some people with spina bifida have reduced or no bladder or bowel control or sensation. This means their body does not tell the brain that they need to use the bathroom and/or they cannot control when they need to use the bathroom. This means that your child’s bathroom routine might look different and your child may require more time to achieve independence with toileting than other children.
Bladder
The bladder may react to damage to the nerves in a variety of different ways. Once a child is born, tests will be performed to determine bladder function.
If the bladder does not empty by itself, you will be taught how to empty your baby’s bladder with a catheter. Catheterization is when you insert a small tube into the bladder through the urethra, to drain the urine. You will be taught this skill by a nurse – you will not need to figure it out on your own. It is a skill, but with practice you can master it.
Bowel
Constipation and diarrhea are common as the bowel might have difficulty holding stool in, or passing it through the bowel. Care for the bowel as an infant involves prevention of constipation and skin irritation on the bum. As your child grows older there are a variety of different bowel management options available.
A urologist will see you after your baby is born and direct care regarding the bladder and bowel. These bladder and bowel considerations are manageable and require patience, persistence and a physician’s care. As your child grows there are many options to achieve a life without diapers.
Orthopeadic Considerations
Club Foot
A club foot is where a foot is twisted or rotated down and inward. This can occur in one or both feet.
An ultrasound during pregnancy showing the presence of a club foot on one foot or both feet can be, taken together with other information, a sign of spina bifida. An ultrasound technician may observe the club foot and pursue further images of the baby's spine in order to provide the radiologist with as much information as possible for assessment and diagnosis.
This is a condition that can be treated quite effectively and, in and of itself, should not have a lasting impact on your child’s quality of life.
Treatment of Club Foot
The most common treatment for club feet is the Ponseti Method.
Treatment begins as early as a few months of age. The treatment will likely be supervised by a pediatric orthopedic surgeon or similar specialty, but in many cases is actually performed by a physiotherapist.
The second phase of treatment involves wearing a pair of supportive shoes or boots that are fastened to a small bar or plate with each foot fastened to the plate at a prescribed angle. For the first 12 weeks or so, the child will likely wear these boots almost 24 hours a day, removing them only for bathing.
The third (and longest) phase of treatment is continual wear of these boots and bar at night (during sleep time) for a few years.
Most individuals who undergo proper treatment will be able to engage in regular physical activity.