I think I thought it was normal for kids to have surgery. I really don’t remember being really scared.
I figured it out slowly. I guess it was probably in middle school when I started to become more self-conscious about the scars that I had and that kind of thing.
I really never liked talking to people about it, so I really didn’t a lot. I kind of just dealt with it myself I guess.
Johanna, age 22
I do have a medical condition
I remember when I was four or five years old, my mom was tucking me into bed at night, and she was like, “Oh, you’re having surgery tomorrow.” And it was a minor surgery – what do you call it? Not a colonoscopy but just an endoscopic procedure – a cystoscopy. And I remember just laying in my bed crying, and I was just so upset that my parents didn’t want to tell me before because they knew I would be really anxious. And I just remember saying to mom, “Why do I always have to have surgeries? Why I do have to have surgeries all the time?” and she just kind of explained the whole situation to me. And I remember just being like, “Oh, I DO have a medical condition, that’s why I’m always at the doctor!”… I think now things are kind of settling down, which is nice, because I’m old enough to understand that if I don’t take this medicine then I will get sick. I think as a little kid it was more like, “Aww, I don’t want to set aside five minutes in the bathroom to cath. That’s so annoying!” But now it’s the whole question of taking five minutes now versus being in the hospital for five days.
Elizabeth, age 16
I realized it little by little…I felt sort of a mixture of feelings. I felt mad and sad at the same time. I just didn’t really think it was fair that I had all my problems!
Siobhan, age 9
Knowing and understanding
Things were pretty easy when I was younger, but now that I’m a teenager, it’s getting very difficult. When we went to Boston the last time they suggested surgery, and it’s just the fact that it’s getting harder and more things are coming up…and knowing more about what’s going on isn’t helping! Well, it does help, but I just recently last year learned a lot more about the human body, because when I was a kid I didn’t really understand. Now knowing and understanding this could really change my life…
Kayla, age 14
Spina bifida is like a snowflake
I have spina bifida, on the level of L5-S1.* There’s a flap of skin in the area of L5-S1, and in that sac, that meningocele, there’s nerves that were damaged…With spina bifida, you have a surgery at birth, and whatever’s damaged is damaged. In my case it was my legs, the back sides of my legs, the calf muscle. I have a little bit weaker hamstrings, the buttock muscles are pretty beat up, and urological and gastroenterological was messed up with me. I’ve had multiple surgeries, in the teens probably, since birth – surgeries when I was younger on my legs, and urologically, they’ve been trying to do things since I was six years old, some successful and some unsuccessful…
With spina bifida, everybody is a little bit different, it’s like a snowflake. And whatever gets affected, that kind of sets your path on what type of problems you’re going to have.
Sam, age 32
Sam, age 32
* A specific part of the spine, between the fifth lumbar and first sacral vertebrae.