What is Spina Bifida?

We often get questions about Denis while we are out and about.  He is a bright and engaging kid and who doesn't love that bright red hair?!  Kids tend to ask about his wheelchair, which doesn't bother us or him in the slightest.  He LOVES to show off his light up caster wheels and do wheelies and spin circles for people.  We often get asked "What is wrong with him?" and while I know that isn't "PC" terminology, I would rather educate on SB than PC.  What has surprised me most is how little people know or have heard of spina bifida!

Spina bifida is the most common neural tube defect, and happens every 1 in every 1000 births.  There are 5 types of spina bifida: spina bifida occulta, closed neural tube defects, meningocele, and myelomeningocele.

Spina bifida occulta is the least severe, and occurs when the vertebrae don't close around the spinal cord all the way.  The spinal cord and the sac around it, called the meninges, are not affects.  Sometimes, people with SBO can have some symptoms, such as back pain, tethered cord, and bladder and bowel control issue.  10-20% of people have SBO with no symptoms, and find out only after an Xray or other diagnostic test for another problem and the radiologist detects the SBO.  Autumn, our second daughter, has SBO that was detected at an xray for another problem she was having, and has no symptoms!

Closed neural tube defects occur when fat, bone or meninges are damaged, but the skin is unharmed.  People can have bowel and bladder control issues and partial paralysis from this kind of SB.

Meningocele is an opening in the vertebrae and skin where the spinal fluid and the meninges protrudes outside the body but the spinal cord remains intact and inside the spinal column. Symptoms vary with meningocele, from very few symptoms to paralysis.

Myelomeningocele is the most sever type of spina bifida. The defect in the spine and the skin allow the spinal cord to protrude outside the body.  The spinal cord is further damaged by amniotic fluid and the effect is severe paralysis from the lesion down and neurogenic bowel and bladder.  Denis has this type of spina bifida.

When the meninges are damaged, this can cause a problem with flow of the cerebro-spinal fluid that protects the brain and spinal cord. This causes a blockage and build-up of the CSF and can cause a condition called hydrocephalus.  When a baby has hydrocephalus, the doctors place a tube called a ventriculoperitoneal shunt.  The shunt drains CSF from the brain to the abdominal cavity, where it is absorbed by the body harmlessly.  Denis also has a VP shunt.

The level that the spine is affected correlates with the severity of the person's disability.  Some people with very low lesions can walk with out assistance.  The higher the lesion, the more muscles and nerves are affected and the more likely the child will need mobility assistance.  Denis's lesion starts at L2-3 and goes all the way down to S3-4.  He has weak quads and hip flexors, but feels nothing below mid thigh, and can't move from the knee down or from the waist down on his backside.

There is an awesome explanation of the levels of sensory and mobility at another blog called About Spina Bifida!

Who, What, When, Where, Why, and How?

  My name is Carissa.  I am a military wife and mother to 5 wonderful children: 4 beautiful homegrown girls, and one redheaded stinker we handpicked from Ukraine.  I have been an orphan advocate for 7 years, and last year was asked to join the team at Grace Haven Ministries as the Orphan Advocate Coordinator.  
   I have always had a special place in my heart for children with special needs.  When I was a teenager, my first summer job was as a volunteer paraprofessional at Rainbows United Inc, in Wichita KS, a preschool for kids with special needs. I got my bachelor's degree in Exercise Physiology with the intention of going on to Physical Therapy school, but God had other intentions for me.  It took me 8 full years to earn that degree because I had made the awesome decision to be a stay at home mom! My first two daughters were born during my last couple of years of college, and cheered me on as I crossed the stage to receive my diploma, earning magna cum laud.  I wouldn't change a thing about how my life has played out!  
    One of my oldest (oldest as in time I have known her, not how old she is!) friends had a daughter 11 months before my first was born.  To her surprise, her beautiful baby was born with spina bifida and so many of our play dates revolved around therapy and road trips to Shriners.  I learned a lot about spina bifida in that time, so when God began calling me to adopt a child with special needs, I immediately put spina bifida at the top of my "I could handle that!" list.
     Fast forward a few year and two more daughters later, and my husband and I finally decided that the time was right in our family dynamic and in his military career to adopt. A couple of years before, a friend had posted a picture of an adorable redheaded toddler in Ukraine and I had never let that image go.  His bright smile and cheerful eyes haunted me, knowing that his day consisted of nothing more than neglect in a crib.  So, off we went to Ukraine, to find this little guy and make him our first son.  

    The first picture I ever saw of my son. 

    Today, 10 months after we took him out of the orphanage forever, Denis is doing remarkably well.  He is learning, he is loving, he is thriving.  And I wish more than anything that more kiddos like him could do the same.  There are an estimated 147 MILLION orphans in the world.  Many of them have special needs, abandoned simply because of a birth defect like spina bifida, or a genetic condition like Down Syndrome.  I have a passion for these kids, for being the eyes and ears of God so He can use me and my passion to set the lonely in families.  Spina bifida shouldn't be the only reason these kids don't have homes!  Spina bifida doesn't have to be scary!  We can CHOOSE SPINA BIFIDA!

Denis, at the WCMX event for RISE adaptive sports.  He doesn't let spina bifida slow him down!