Day 17: Managing SB Long-Term

Welcome back to 31 Days of Spina Bifida Awareness!  Today I’m talking a bit about how Spina bifida is managed over a lifetime.  It takes a team of doctors and specialists and it changes all the time!  In our case Mason began life needing a neurosurgeon, plastic surgeon/craniofacial specialist, orthopedic surgeon, orthotist, developmental pediatric optometrist (or is it opthomologist?), pediatrician, urologist, and even therapists.  Add in social worker, case manager, and the rest of the Myelo Clinic team and he has quite the list of doctors he works with.  There are some he will use more or less as time goes on. 

For example, in the beginning Mason saw the orthopedic surgeon weekly to treat his clubfeet with casts, then he started seeing the orthotist for a foot brace.  (See some of this process here, here, and here). Now he’ll see them in 6 and 3 months respectively.  He only needed one visit with the vision specialist.  However his already regular visits with therapists will increase over time.

Mason goes to Myelo Clinic to see the whole team every 3 months.  As he gets older he’ll see them every 6 months and eventually just once a year or as needed.  You can read about some of his Myelo Clinic visits here, here, and here. 

Specific things that need managed long term for SB include:

• Neurological function and shunt care – Mason will likely need several more shunt revisions over time.  He may develop a tethered spinal cord as he grows and need surgery to detach it.
• Physical Therapy – Most of the physical, developmental skills a baby, toddler, and child acquire will be difficult challenges for Mason.  Already he is 9 months old and cannot sit up independently.  He’ll have to learn ways to compensate for his paralysis when getting into and out of seating, up and down stairs, bathing, playing, and more.  He’ll learn to use wheelchairs and other equipment and need tremendous upper body strength. 
• Bladder and bowel management – Because of the lack of sensation and muscle control he’ll deal with incontinence (leaking), constipation, and more.  He will have to be monitored to make sure his kidneys are doing okay with just catherizing.  If not then medications may be needed.  Surgeries are also likely to help manage these things.  An enema routine will be developed to help him achieve ‘social continence’.
• Skin Care – From the care of surgery sites in the beginning to skin in general.  Being unable to feel half of his body makes it very likely that Mason will get cuts, scrapes, bruises, or injuries without realizing it.  Using a wheelchair increases the likelyhood of pressure sores.  He also has the typical sensitive skin of a red-head and is prone to eczema.  All of these things are overseen by skin specialists.
• Equipment – As Mason grows his equipment needs will grow and change.  He’ll need a wheelchair for daily living.

There are more things, but those are the main ones that come to mind for me right now.  None of it is impossible to handle, it just requires patience and learning how to do things in new ways.  As a mother I have learned so many new things already, including how to be an advocate for my child now when he cannot speak up and make his needs known.