Liza's Story

Hello Friends! Keeping in mind that October is Spina Bifida Awareness month, we have a wonderful article written by Liza, an adult with Spina Bifida. Liza has been generous enough to share her story with us. I sincerely thank her for using her personal story to educate us about Spina Bifida and what life with it can be like. Here is Liza's story:

My name is Liza (with a Z, not Lisa with an S).  I am 29 years old and the single mother of a toddler.  I was born with a Birth Defect called Spina Bifida. Spina Bifida is a type of “neural tube” (spine) defect where the bones of the spine do not fully form at some point along the back, leaving the spinal cord unprotected in that spot.  This can be anything from a larger than normal space between 2 vertebrae, to the spinal cord being exposed to the outside of the body.  The neural tube forms at about 26 days after conception, so by the time a woman finds out she is pregnant, the neural tube has most likely already formed.  There are 3 main types of Spina Bifida: Occulta, Meningocele (“men-in-joe-seal”), and Myelomeningocele (“my-low-men-in-joe-seal”).
 According to the CDC, Each year, about 1,500 babies are born with spina bifida (sadly, many are aborted because of a lack of understanding as to how exactly Spina Bifida affects people.).  Spina Bifida is the most common birth defect in the United States, but for some reason most people have never heard of it, unless/until it affects themselves or a family member or close friend.  No one knows exactly what causes Spina Bifida.  For certain cases it seems to be genetic.  And doctors and scientists believe it could also be from not getting enough folic acid during the time the neural tube is developing.

I have the most severe of Spina Bifida, Myelomeningocele.  This means that my spinal cord was actually protruding from my back when I was born.    Spina Bifida usually causes nerve damage below the spot of the defect.  For me specifically that means I cannot feel anything besides pressure on the bottoms of my feet, backs of my legs, and gluteus maximus. My feet are always cold when it is cold outside.  I have to use a catheter to urinate, and do not have regular bowel movements.

My parents had no idea I had Spina Bifida before I was born (now it is common to know during pregnancy, because of ultrasounds and other tests).  After I was born I was flown from Wyoming to Denver Colorado, where I had surgery to close my back.  I have had about 11 more surgeries on my bladder, feet and legs, as well as 2 more on my back.

My childhood was filled with hospitals, IV’s, MRI’s, CT/Cat scans, X-rays, surgeries, recovering from surgeries, heavy duty pain killers, ER trips and doctor’s appointments. As well as being teased for walking with a limp (kids are ruthless).  This was all normal for me, but my childhood was also filled with “normal” kid stuff.

 Every year I would go to the closest major city to an “MM (short for myelomeningocele) Clinic”.  It was an all-day thing where I would see lots of specialists: Neurologist, Neurosurgeons, Nutritionists, Urologists, Internal specialists, (I’m sure I’m forgetting a few.)
It wasn’t until about high school that I realized this was not “normal” for everyone.  But I never really thought about it before then, because it was “normal” for me.

I worked full time after high school doing mostly fast food jobs.  It was really difficult because all the standing and moving caused lots of pain, which registered once I was home and stopped moving.  I wasn’t really able to do anything besides work because I was in too much pain.  But I just sucked it up and did it, because that is what adults did.
  College was difficult for me, mostly because of the attendance requirement.  With my bowel and bladder issues, showing up every day, or for every class was not an option.  Eventually I would get so far behind that I couldn’t keep up.
I got pregnant with my son when I was 27.  It was a huge shock because I vividly remember doctors telling me that I would not be able to get pregnant without medical assistance.  (The one time that I listen to what a doctor says is possible…).  After the shock of being pregnant wore off, I wondered if carrying and delivering a baby was even going to be possible for me.  I tried doing research on line, but couldn’t find anything about being pregnant and having Spina Bifida.  I saw a perinatal specialist when I was pregnant that assured me that everything should be fine, and since I could touch my toes, I should even be able to have a natural delivery.  (I never figured out what touching my toes had to do with delivering a baby.).  My mom worried the entire time I was pregnant that my son would have Spina Bifida (It is not usually genetic, but we believe in my case that it is genetic).  My thought on it was “Who better to have a child with Spina Bifida, than someone who has had it for 27 years, and knows everything involved??”  I was more interested in the fact that my feet were warm all winter! (Thank you increased blood flow! Lol.)  My son was born perfectly healthy, and I had a normal delivery after 22.5 hours of labor.  This was one of many instances that I was glad to have nerve damage.  While my labor was definitely uncomfortable, it didn’t actually hurt that much.
I found out when my son was about 6 months old that I had a tethered spinal cord, a condition that is fairly common for people with Spina Bifida.
The spinal cord should float freely in spinal fluid, but with tethered cord the spine attaches to scar tissue on the back.  This pulls the spinal cord tight and can cause (further) nerve damage.
I have been looking for a neurosurgeon to release my spinal cord for almost a year now, and so far have not found one that is capable of doing the surgery I need, without causing more damage, and that will take my insurance.  Finding the specialists that people with Spina Bifida need to see is so much more difficult as an adult than it is to find the same specialists for kids with Spina Bifida.

Having a tethered spinal cord has caused further nerve damage and made my legs weaker than they were before, so I can’t stand as long as I was able to before. That means that I won’t be able to work anymore, at least until/unless I get training in a job where I can work from home, so that I can stand/sit/lay down when I need to.  And even though Spina Bifida is on Social Security’s list of qualifying disabilities, I have been denied for Disability about 3 times, and am in the process of appealing those decisions.

Having Spina Bifida is difficult, but it has taught me many valuable lessons that I would never have learned otherwise.  I learned that staying positive, no matter how bad it looks, has a huge impact on out-come.  I learned patience (from sitting around waiting for Doctors or tests).  I learned to ignore negative people.  I learned not to judge people, and to look at things from other points of view besides my own.

Friends after reading Liza's story I feel so much awe and respect for people who just overcome. I have relatively little to complain about in my life compared with some of the people we've met this month, yet I still manage to do plenty of complaining! Please show Liza some love for her post in the form of comments below! Thanks so much Liza for your honesty, your humanity and your courage. Until next time, Live and love well my friends! ~Teresa