VACTERL Association

I hate talking about my birth defects. I like to pretend it doesn't affect me. I like to pretend there's nothing wrong with me. But let's be real, there's a ton wrong with me. My biggest fear is everyone figuring out that I have all these things wrong with me and judging me. So what am I going to do? Post it on the internet for everyone and their mother to see. Obviously.

VACTERL association. Basically, here's an introduction: Once upon a time, there were a bunch of non-random birth defects that were caused by something doctors don't know. Each letter in "VACTERL" association stands for a different thing wrong with you. If you have 3+ then congratulations, you have it.

V-Vertebral Anomalies
A-Anal Atresia
C-Cardiac
T-Trachea
E-Esophogus
R-Renal
L-Limb Anomalies




Oh, and not to worry, if those aren't enough, people with VACTERL association also tend to have other defects as well. Just for funzies.

So now is where I'm going to explain what in the heck is wrong with me. Because, contrary to rumors that spread when I was in high school, I am in fact NOT dying of cancer. If I was, I obviously would have made the most attractive jerk in school fall in love and then marry me....just like Mandy Moore.

Anyway....

Vertebral Anomalies.
First off, I have two deformed vertebrae. I'm missing the wing lookin' things on the side.
Side effects: I'm pretty sure this affects my balance. #ReasonsWhyICantDoACartwheel

I have a congenital defect in the bone causing scoliosis. Which means my spine looks like the skeleton's on there right. Twisted sacrum and all.

Side effects: Pain. Mostly from my muscles trying to overcompensate for the uneven workload.

Then, of course, I have spina bifida occulta. I'm pretty sure I have the lipomeningocele variation. It's hard to tell seeing as I didn't find out I had it until I was going through health papers searching for my immunization records and stumbled upon a document saying I had it. But seeing as I did have surgery to take out the tumor, I'm pretty dang sure I have the kind where you have a tethered spinal cord attached to a tumor. 

It's caused by your spine failing to fuse all of the way. #YOLO 

Side effects: pain in the back and continence issues. Always a joy.

Anal Anomalies

My favorite....Actually, it's the one thing that I'm most scared to tell people, and quite frankly, with good reason. Growing up, kids are not nice. And you know what? Some adults aren't either. But if you're really going to judge me for something that I can't even remotely help....well, then I think you need to re-evaluate what kind of person you are.

I have what you would call an imperforate anus. Basically, God was like, "let there be baby, but no bum hole....Oh, and that sphincter muscle that people need to go/keep in #2? You only need part of that, right?"

So congratulations to me, I have a man-made one. You know how if you keep earrings in your ears for long enough enough that the hole will stay open? Same concept, except twice a day for many, many years I would have to painfully get rid of scar tissue that had built up.

Oh, in case continence issues and the formerly listed routine weren't humiliating and debasing enough, I had to have a colostomy bag for a while. You see, my man-made anus got infected. And they couldn't have feces going into the affected area. So they disconnected my intestines, cut a hole in my abdomen, and my 4/5 year old self got to go #2 in a bag.

Now, you might say it wasn't that bad because I was so young, right? Wrong. I very distinctly remember being at the pool with my mom and a "grown-up" gawking and making fun of me. It didn't matter that I was little, people who lacked understanding made it hard on me, anyway.

As long as we're on subjects that I hate to talk about, might as well talk about my intestine issues. Like, oh, the fact that they don't like to work. I would take medications like Senekot and mineral oil, I would have to use enemas, the works. One time I was so distended that my intestines almost exploded. A small 5-year old girl had to have TWO pounds of stuff that shouldn't have been there surgically removed. Sounds like fun, doesn't it? My f

avorite was trying so hard to go to the bathroom (while missing a muscle that aids this process) that I gave myself a hernia.

After the longest time I really just was ending up in the emergency room every couple of months. So they tried what was called the M.A.C.E procedure. Also known as the Malone Antegrade Continence Enema.  They basically crushed my appendix into a tube, fastened it to my abdominal wall, and used it as sort of a funnel to my intestines. There was a stoma (or hole) right below my belly button that I would have to push a catheter in. From there, I would have to put in about a liter of fluids.

The worst part wasn't that I was stuck in the bathroom for ages or that I would struggle with continence afterward. Nope, the worst was having to put in the catheter. Most people could take it right out when they were done. But I scar too easily. Every time I tried to put it in, I would experience sharp pain, bleeding, and inflammation. It would be bright red. It would hurt for at least the next hour. Instead, I preferred to keep it in, and taped to my body--which provided other problems. I had this from 5th grade to my freshman year of high school. This is the time when kids were the meanest. People could very obviously see the tube was there--you can easily see that my stomach wasn't flat. Then there's PE, where you get to change in front of everyone. I still to this day remember a bully in 5th grade who, because she was just mad (not even at me), saying that she was going to punch me right in the stomach where my catheter was. Never mind the fact that after that surgery it took a full month before I could even stand up straight.

After years of experimenting with this surgery and finding it ineffective, I decided to have a partial colectomy. It was then that they found out that part of my colon was kinked.

After that, I stopped taking medication. Technically, the average person with this surgery is supposed to have to go to the bathroom 7 times a day. Me...every 1-3 days. Unless I have issues.

Cardiac

Luckily, I don't have any severe heart defects. I had a heart murmur as a baby that resolved itself. Later, getting a regular physical, I had a doctor tell me I had a heart murmur, but I just prefer to think he's full of it, because no other doctor has told me that. Later I talked to him and he said it might be exercised induced. Just like my asthma....ha.

Tracheoesophageal Fistula

In laman's terms, there was a weird connection between my esophagus and trachea, and my esophagus wasn't attached to my stomach. There are many variations, which can look like any of the images below:

Anyway, they stretched down my esophagus and attached it to my stomach. However, due to this weird connection, I also have Gastroesophageal Reflux Disease. So the acid in my stomach leaks back into my esophagus, which gives me heartburn. It also doesn't help that my esophagus spasms. So, for a while, I had Barrett's Esophagus, which is where the lining of the esophagus is damaged by stomach acid and is mutated to look like the lining of your stomach. Which, is scary, because it can lead into Esophageal cancer. However, I fixed it, so my esophagus cells are sort of normal right now.

As far as my trachea goes, it may or may not be the reason why my lung collapsed when I was born. Actually, I have no idea why it did. Kind of like how I have no idea why I had seizures as a baby.

Renal

A lot of people have kidney issues. Bless my lucky stars, I don't.

Limb Anomalies

Limb anomalies are very common with people with VACTERL's. I'm pretty sure I have Type II Thumb Hypoplasia. Just like the picture below, I'm missing a thumb muscle. My thumb is also twisted in the joint. #ReasonsWhyIThrowWithMyLeftHand

And there you have it, folks. Everything that I've been scared my entire life to share in one giant blog post. And no, I don't want your pity. If I did, I would have told people about this years ago instead of trying to walk around pretending like I'm normal. All I ask is that you think. Next time when you see a person walking around and you're tempted to poke fun of them, THINK. Think what it would be like to be in their shoes, whether it's a mental or physical condition. Be a little more understanding and tender-hearted.