As your baby enters into the toddler stage, you will continue to face some of the same challenges you faced during the first year of life.  You will also begin to experience new challenges, while hopefully developing past some of the issues that were present at birth.

Developmental Delays

Most people with spina bifida are born with average cognitive abilities.  Others may experience some brain damage as a complication of the neural tube defect or some other secondary disability.  However, even if your child is on track developmentally at first, they may start falling behind due to physical limitations.  Obviously, a child who is not ambulatory by 18mos will have scores that start dropping in gross motor skills, but fine motor skills and language, social skills, and even oral development can also suffer either from associated brain injury or simply from the delay in gross motor skills.  For example, a child who is unable to walk and has some weakness in the trunk may spend a lot of time prop sitting, supporting themselves with their hands. This limits their ability to use their hands freely to manipulate objects, delaying fine motor skills.  Lack of mobility can delay social and language skills because children are not able to separate from their parents and explore in a developmentally appropriate manner.  Language is enriched by encountering new objects and talking to a variety of people.  Even oral development is affected by balance and vestibular stimulation.  The ability to chew and swallow solid foods can be delayed by a lack of mobility and balance.

Early Intervention

Because of the strong possibility of developmental delays, children with spina bifida should receive services from early intervention programs.  Most states have some sort of service that provides therapies to children with special needs from birth until age three- at which time it becomes the responsibility of the public school system.  If your child is not eligible for early intervention services, do your best to acquire some sort of physical or occupational therapy through a doctor’s referral.

Mobility Issues

Since function varies from child to child, mobility issues are unique to each situation.  Children may crawl on time, but not walk.  Children may sit up on time, but not crawl.  Some children may even be delayed in sitting unassisted.  For the child who is not ambulatory, crawling is their key to freedom.  Star Cars, Ready Racers, and scooter boards are all pre-wheelchair devices that help a child become independent and build the necessary muscles for propelling a wheelchair.  The child that crawls may use a modified method such as scooting on their bottom or crawling by pulling forward with their arms and letting their legs drag behind.  Once a child begins standing, it is important to make sure they have appropriate bracing and support for their ankles and legs.  Ankle Foot Orthotics (AFOs) support the leg and ankle from below the knee.  Knee Ankle Foot Orthotics (KAFOs) add support at the knee, and Hip Knee Ankle Foot Orthotics (HKAFOs) provide even more support, bracing up to the hips and trunk.  Some children are able to walk with little or no support, while others use walkers or forearm crutches.  Some children are able to walk with a reciprocal gait and others use a swing through gait, where both legs swing forward at the same time.  At this age, children work on building strength and endurance so they can weightbear and gain some functional ambulation.  Even those who will mainly be wheelchair users try to make some sort of plan for standing and transferring from their chair.  For many children, muscle weakness and function isn’t the only barrier to walking.  Balance issues, and a lack of confidence and motivation fueled by the fear of falling, can be enormous problems to overcome.

Bowel and Bladder

More detailed information relating to bowel programs, catheterization, and urodynamics testing is covered on the “Bowel” and “Bladder” pages.  Since it is still socially acceptable for toddlers to wear diapers, most parents to do not push for a structured bowel program at this time.   Many children do have to be intermittently cathed to avoid urinary tract infections or kidney reflux, but leakage isn’t as much as an issue since they are not in underwear.  It is important, however, to avoid constipation through diet and possibly laxatives or stimulants.  Constipation causes a host of problems- even contributing to UTIs.  Obviously we need to make sure elimination is taking place, and going to the bathroom frequently is often mistaken as being “not constipated’.  Constipation has more to do with the consistency of the stool.  Even constipated children can have a dirty diaper with every change.  These diapers will contain hard or pellet like poop.  This is not good for the intestines and can cause the colon to become distended

Other Considerations

As your child grows, keep a close eye out for any other medical needs that may develop.  Shunt malfunction, chiari malformation, seizure, dislocated hips, obesity or failure to thrive, and eye problems such as strabismus, are not unusual occurrences in children with spina bifida.

Leave a Reply