VACTERL

In 1986, I was born with something called VACTERL, which is a series of birth defects. Each letter stands for a body system it can affect. You have to have 3 of the 7 to qualify.

I have all seven. Our tiny (but mighty!) VACTERL community calls that “winning the lottery”.

Me as a newborn, hooked up to machines. I spent my first year of life hospitalized.

Me as a newborn, hooked up to machines. I spent my first year of life hospitalized.

Here’s the general description of each letter and how it messes with each one of my body systems.

V – Vertebrae. I have scoliosis, which couldn’t be corrected, so because of that I am very short – 4′ 5″, to be exact.

A – Anal. I have twice the amount of colon that you’re supposed to have. When I was born, I had no anal opening, so one had to be surgically built for me the day after I was born.

C – Cardiac. I was born with multiple holes in my heart that were fixed when I was one year old. It has some damage, but overall it functions fine and I only see a cardiologist once a year just to check everything is still going well.

T/E – Tracheal/ Esophageal. When I was born my trachea and esphogus were wrapped around each other and I immediately aspirated (fluid in my lungs). They had to be fixed, leaving a ton of scar tissue and motility issues when it comes to consuming solid food. I get regular esophagus dilutions, but I still sometimes get “impacted” and have to have an emergency surgery to fix it. I had 3 in 2016, all within a month or so. Wasn’t fun.

R – Renal. I have one kidney, that is monitor carefully and currently doing very well. I was born with a tiny bladder, and I had a urostomy (I peed from a hole in my skin into a bag attacked to my side) until I was twelve, which is when I got something called a “mitrofanoff” and an augmented bladder (built out of my colon). I now catheterize through my bellybutton. It’s marvelous.

L – Limb. Slightly shorted right hand, and I’m missing my right thumb. I can still text like a boss and type 100 WPM on a computer.