This question comes up pretty much every week for me as I try to explain to people why I'm part of Monty Python's Ministry of the Silly Walks. It's one that I can't really explain in depth without really boring people, or telling them in a concise manner. You see, I was a pretty screwed up baby.
To start, I was born 12 weeks early. So that's like 28 weeks along... or something like that. Mom got sick in the middle of the pregnancy.... or something like that, and a little while later, SURPRISE. Mom goes to the hospital, and through divine intervention (EIRMC in Idaho Falls had a good NICU, but not good enough) my mom was sent on a helicopter down to Primary Children's Medical Center, one of the leading hospitals in the west when it comes to child care. I was "technically" born at University of Utah Medical Center, but both facilities are actually interconnected. More importantly, I'm technically a Utahn. Yuck. My cousins enjoy reminding me of that one.
In a perfect world, I would have come into this life like any other premature baby. I would have been a little weak for a baby and a little small, but would have spent a few weeks in the hospital and gone home. But I didn't. Completely unrelated to any of the prematurity was my diagnosis of VACTERL Association (vac-ter-ul). This is an acronym for a wide array of not necessarily, but usually paired together birth defects. Basically, the doctors say, "Screw it, this kid jacked up, yo!" Doctors speak like that, too.
To break it down:
V is for vertebral- Anything that has to do with your spine. Usually a partially formed vertebrae, or can develop scoliosis. I have some curvature to my spine, but it isn't progressive. I also had a "tethered spinal cord" which basically meant that the end of my spinal cord is supposed to just kinda... float there. But it attached to the wall of my vertebrae.
A is for anal- Well that sounded awkward. This also includes general intestinal problems. Luckily I have very limited problems with the anal portion and more with the intestines. My anus works fine thank you, but my stomach hates me usually. Just ask my roommates.
C is for cardiac- Heart problems, in a nutshell. These were the least of my worries though. I had what's called a patent ductus arteriosus (PDA). This wasn't necessarily lumped into VACTERL's. It's cause is more because of my prematurity. Essentially, there is a valve between your pulmonary artery and your aorta that regulates pressure between the two, which is supposed to close off after a while, but I wasn't "cooked" long enough to get it closed up so the doctors had to do it for me. This was my second surgery and was hours after my first. Now my heart pumps just fine and is one of the best
TE if for Tracheoesophageal Fistula- Try saying that five times fast. I'll wait........... This was my first surgery that was performed just a few hours after I was born.
Okay. So your trachea is your wind pipe. It goes from your throat and forks into both sides of your lungs. What happened, is my esophagus came down along side my trachea, like it was supposed to, but then it just stopped. So If I ate, the food would have just dumped into my body cavity. The end that came up from my stomach that was supposed to attach to the other end, came into my esophagus, which is also not good. If there had been food in there and I had barfed, it would have gone into my lungs. Now, because of this surgery, I have occasional acid reflux and scar tissue in my lungs that makes it hard to breath. Once upon my a time my lungs were "underdeveloped" for my age, which was the reason I huffed and puffed, but now it's just the scar tissue that kills me. So if see me get winded going up stairs, that's why. I'm as fit as an ox, guys. My lungs just hate me.
R is for renal, which is your kidneys in a nut shell. This can also mean urinary problems. 98% of the time, I have no problem with this. That other two percent of the time, your bladder shuts down the day before your oldest sister gets married and you end up in the ER with your mom making frantic phone calls making sure all the last minute things are in order. I wouldn't recommend it.
L is for Limb defects. This is really the most noticeable aspect of my VACTERL craziness. I gots jacked up legs folks. If you haven't noticed, you obviously have either never seen me walk, or you haven't seen me in shorts. Now, in long pants, it just kinda looks like I limp. At least that's what people tell me. But it's a whole heck of a lot more than that. There are three basic parts to my jacked up legs.
-One- I had Clubbed Feet. basically, my feet were turned in and looked golf club like in their angle. There can be some pretty severe forms. I had it good compared to many.
-Two- I'm hypertension in my hamstrings. Usually hypertension is a heart condition, but if you break it down, it's hyper(over) tension. My hammies were super tight, causing me to walk with a crouch, which I still tend to have thanks to years of muscle memory. The tightness is almost nonexistent any more.
-Three- Joints. My leg joints are jacked up... like all of them. My hips are alright, but not great. My knees look over inflated and are stiff, and my ankles have almost no range of motion.. That's why it took me two years to find the right wakeboard bindings and why it takes me 5 minutes to get motocross boots on.
Oh yeah. I had an extra thumb too.
So on top of the VACTERL, I had what's called Hydrocephalus, also called water on the brain. This is usually caused by brain aneurysms, commonly called a stroke. This caused excess cerebrospinal fluid on my brain which build up pressure, which isn't really good at all. So they put in what's called a VP shunt to hook up to the top of my head and drain that fluid down into my stomach. The first one was put in a month after I was born, then it failed and they had to put a second one in when I was 3 and another was placed a year later.
I can also stick my tongue in my nasal cavity, but I don't think that has to do with any of this. Not sure though.
Soooo..... that pretty much sums me up. twenty-one years and twenty some-odd surgeries later, I am pretty much as healthy as I'll ever be and I thank God that I'm at this point. Because at first, we were just hoping I wouldn't be a vegetable. Though sometimes I'm a couch potato. But that's technically a tuber. Not a veggie.
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