Spina Bifida Stories: Liza

My name is Liza, and I was born in 1982 with Myelomeningocele. My parents had no idea I had this until I was born. Luckily the umbilical cord was wrapped around my arm and my mom had to have a C-section. The story I have heard is, as soon as they got to me, I rolled over so the doctors could see my back. I was then flown from Laramie Wyoming to Denver Colorado where my SB lesion was closed.

I remember every year going to "MM (myelomeningocele) clinics" where I would see all of the specialists: Urology, Neurology, Orthopedics, Nutritionist, Social workers. I also remember getting to pick out a toy every year at the clinic in Denver (that was totally cool :). I never really minded going to these clinics. It wasn't until my Dad went with me one year when I was about 15 that I realized it could be a little boring. My dad's exact quote, as he paced back and forth in the room after I had only seen 1 doctor, was "How do you do this?". It was just part of life.

I have had about 11 surgeries so far. Tendon transfers, 1 tethered cord release, Ureter implants, Vesicostomy. Surgery became a normal part of my life too ( But I will admit that waking up from anesthesia always sucked ).

I've always been able to walk independently. I had AFO's and orthotics as a kid, but decided to stop wearing them sometime around High School. I did get teased quite a bit for the way I walked as a kid, but the other kids quickly got bored when they didn't get any reaction from me (thanks for teaching me to ignore them Mom :). I played basketball in school from about 3rd grade until 6th grade. My orthopedic surgeon decided I needed to have my ankle fused during one of these years, and when I asked if I would be able to run and play basketball after the surgery, he told me "well you're not able to run now." (Yeah, I was MAD!). When he asked for a demonstration, he couldn't wait long enough for me to get my shoes on so I could show him...

In Junior High my health teacher asked if I would be willing to give a talk about Spina Bifida. I did research and gave talks to my health class both years of junior high, and went back and did my talk to all of the girls health classes for the first 3 years I was in High School.

 

I worked full time for many years, doing mostly fast food. It was hard, and my body always hurt quite a bit, But I just thought that's what adults did, so I sucked it up and did it (and didn't move when I was off work...).

I got pregnant when I was 27 years old (which was a HUGE shock to me, because I vividly remember at least 2 doctors telling me I wouldn't be able to get pregnant. The one time I listen to what a Doctor said...). My mom was totally terrified most of my pregnancy that my son would have Spina Bifida as well, because my Spina Bifida is more than likely genetic. My thoughts on it were "well if he does who better to deal with it than someone that has dealt with it for 27 years and knows the ropes?". After 22.5 hours of labor, Gage was born perfectly healthy in December 2009. My pregnancy was great (after the "morning" sickness was gone.). I was totally amazed to have warm feet in the winter! All of the nurses that came into my hospital room commented that "He's just so alert, and he's just so active!" And that has NEVER changed... He keeps me on my toes! lol.

In November of 2009 my left hip started feeling weak and I had to stop working, I figured it was part of the pregnancy hormones, but it didn't go away after my pregnancy. When I mentioned this to my OB/GYN about 6 months after I had my son, she agreed that it was part of pregnancy and "it would go away, or it wouldn't". Eventually I found out that I have another tethered spinal cord, and will need surgery to release it. After doing some research I found out that pushing during the delivery of a baby can cause Tethered cord. (Had I known this before I had my son, I more than likely would have had a C-section.) I remember being scared before a couple of my surgeries as a kid, but it was nothing like it is now that I have my son to worry about too.

 

Spina Bifida has always been a part of my life, so everything that goes along with it is just normal. It sucks sometimes, but everybody has struggles in life. Having Spina Bifida has taught me a lot of very valuable lessons in life: It's taught me patience, to be kind to other people, it's taught me not to listen to any of the "neigh sayers", it's taught me to look at things from more than one point of view. Luckily I learned early, that having a positive attitude makes a world of difference.

People think that my life is hard, and it can be, but it's all I know, and there is very little I would change about my life.