I’m Emily and I have VACTERL, a condition few about know about, likely because they’ve never met any adults with VACTERL. I’ve decided to use this blog to share my journey and inspire others.
Whenever I explain VACTERL to somebody, I have two ways to go about it – the medical way or the regular “layperson” way. I can describe it in detail, talking about VSD/ASD and renal systems, or I can talk about it simply, using words like “bad blood flow” and “missing organs.” Depending on my audience, I decide how I want to define VACTERL to an individual.
I’m writing this for a reason. People ask me what in the world is VACTERL is all the time. Some people are asking to be polite, some people are asking out of curiosity – the fact that I have it and my husband has it and we met at a support group conference for it probably has something to do with it.
What is VACTERL?
So what is VACTERL? Each letter stands for a specific diagnosis in the VACTERL acronym. In 1986, when I was born and diagnosed, it was just called VATER. Yep, they added some extra letters somewhere along the way. Lucky me, I have all 7 letters. We call that winning the lottery. You have to have a minimum of 3 out of 7 to qualify.
How I have VACTERL
The description I’m about to give is how VACTERL relates to just me. Each case is very, very different.
Here’s what my VACTERL stands for:
V – Vertebrae. I have scoliosis and a few fused vertebrae, so I have Vertebral VACTERL. This is most likely the reason I’m 4 foot, 5 inches tall. I’m a fan of big hair and big heels for a reason.
A – Anal. Yep, the part that no one wants to talk about but I’m going to. I have a lot of colon, much more than one person should have. I also have some digestive issues.
C – Cardiac. I was born with several heart problems, which have been corrected. I am still monitored when I have surgery, but all those problems have been reduced to a small murmur. I can live with that.
T/E – Tracheal/Esophageal. Food gets stuck in my throat. I’m extremely lucky that I am able to eat orally, because many VACTERL kids can not. I did have a feeding tube as a kid, until I ripped it out when I was 8. There are many foods that I can not eat because my throat simply can’t process them – thick foods, like dry bread, choke me. Sometimes simple water chokes me. I have to chew my food very, very carefully.
R – Renal. I have renal difficulties with VACTERL in that I have one kidney. It’s big, most likely because it’s both kidneys fused together. We’ll never know. It’s given me alot of trouble over the years, and it’s monitored carefully. In 1999, my urologist did something quite nice for me – removed some of my colon, made it a bladder, and I catheterize through my bellybutton now. The bellybutton thing is called a mitrofanoff. I’ve had to have it fixed a few times, but I love it and I wouldn’t change it.
L – Limb. VACTERL limb defects vary. I’m missing my right thumb and my right arm is shorter than my left by several inches. The thing is, in pictures for example, you can’t tell. No one notices my finger missing and if they do, they do. In college I pointed at something with my right hand and my teacher thought I flipped her off. She considered it one of her biggest professional embarrassments at the time. To me it was just funny.
The list of VACTERL as it relates to me looks terrible on paper, doesn’t it? Every time I read something like this I write about myself, I think “damn, I really shouldn’t be alive.” But I am. And It’s not that bad, really.
The majority of my VACTERL-related conditions are fixed and under control. My early life was hell – they didn’t think I’d make it. VACTERL baby life expectancy can be varied. Looking at the pictures of me in the hospital – I spent the first year or so in the hospital and the majority of my childhood there – I can see how fragile and sick I was. I’m a trim
Am I fragile now? At times. However, the fragile times are getting less and less and I’m a pretty strong adult now. I’m always going to have problems and issues, to a degree. There will always be doctors and procedures and doctors appointments; that’s just how my life worked out. It’s manageable. It’s doable. It’s fine. It’s VACTERL and I’m trying to do my part with VACTERL awareness.