Getting Introduced to Spina Bifida

Once I found out, all I could do is research.  What is Spina Bifida?  How is our journey going to be?  The first thing I did that night after the ultrasound was google this word "Spina Bifida".  Man oh man, how could this word look so ugly.  All these horrible pictures showed up and the descriptions were so excruciating.  I just started freaking myself out.  I tried to share that with my husband but he wanted nothing to do with the computer at that time.  For some reason it was just making things worse, it made me cry even more, and broke my heart.  I kept asking myself, if I was going to be able to handle it.  Then answered my own question like a crazy person, "Its not about me!  I have to handle it."  I just kept researching and researching and this is what I found. 
There are different forms of Spina Bifida, which are:

Occulta
Often called hidden Spina Bifida, the spinal cord and the nerves are usually normal and there is no opening on the back. In this relatively harmless form of Spina Bifida, there is a small defect or gap in a few of the small bones (vertebrae) that make up the spine.

There may be no motor or sensory impairments evident at birth. Subtle, progressive neurologic deterioration often becomes evident in later childhood or adulthood. 

In many instances, Spina Bifida Occulta is so mild that there is no disturbance of spinal function at all. Occulta can be diagnosed at any age.

Meningocele
The protective coatings (meninges) come through the open part of the spine like a sac that is pushed out. Cerebrospinal fluid is in the sac and there is usually no nerve damage. Individuals may suffer minor disabilities. Additional problems can develop later in life.

Myelomeningocele
This form of Spina Bifida occurs when the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine. This is the most serious type of Spina Bifida, which causes nerve damage and more severe disabilities.

Unfortunately Luke was diagnosed with Myelomeningocele.  Looking more into this form of SB I learned that his motor skills will be affected, his mobility might have complications or he might not have lower mobility at all.  Most likely he would have bowel and bladder problems.  Hydrocephelus which is fluid collecting in the brain caused by the back opening.  Also possible brain damage.

After this I just kept searching and searching for something online that said the doctors could be incorrect.  I continued looking for anything saying its the wrong diagnosis.  I didn't give up!  I ended up finding a website called www.spinabifidaconnection.com and was amazed and blessed with my findings.  This was a support group for expectant moms, kids with sb, parents with kids that have sb, and people who live with sb.  There were so many questions and so many answers.  You know how when you experience something so traumatic and some peoples response is "I understand."  Until I found this website I was like BULL.  No one understands!  But guess what?  I'm not the only one.  There were so many people experiencing everything I was going through and some who have been there done it.  I was so scared and they were there for me and many other expectant moms.  Its was comforting.  I didn't know what to expect when Luke would be born, but many of the parents had pics of their precious babies online and they looked so beautiful, so happy, and so not SB.  Everyday those pictures gave me comfort. Everyday their words gave me confidence. Don't get me wrong I was still scared but it was as if someone was holding my hand, telling me everything would be okay.  The one thing I did hate was when I would ask questions and the one answer I always received was, "wait and see."  Geeze!  How I hate that phase.  I still hear it now! Wait and See.  Could someone just tell me what to expect!  Reality is - Every baby is different, their bodies react different, all people could do, is tell you their experiences and explain the best they can.  That's why I decided on making this blog.  So the next one will be about Lukes birth.  Stay Tuned :)