Hello. My name is Brianna, and I am 5 years old...almost 6 since my birthday is in April (Actually, that was in 2000, so you can imagine just how old I am now!). First I'll tell you about what makes me tick, and then I'll tell you about some pretty rare medical problems that I have to put up with, OK? 

Here goes. I like to play with my Barbies, and I love my doll house, even though my mom won't buy any more things for it. I also love my kitties, Molly and Shaggy. Shaggy is HUGE...14 pounds and I can't even pick him up! Molly is tiny. She is only like 3 pounds (at least that's what it seems like). My cats are both grey with black and white stripes, but Shaggy has long hair, sort of like me! One time I tried to brush out his tangles with my hair brush. My mom had a big fit about that one! She also didn't think it was such a great idea when I used my no-more-tangles on him. Moms!

 I like to ride my bike, though I still ride a tricycle since I can't balance on a two wheeler yet. There are some other things I can't do, too, like running down the street. Now that is NOT because I don't run fast. I do. It's because my doctor is worried that if I fell, there would be tremendous problems. That really makes me mad, because I want to do so many things that I can't! Sometimes I jump up and down on the couch. At least my doctor said that couch jumping is OK. My mom feels differently, though. You should see her face when I do that! She says she's going to have a heart attack if I keep it up...she just doesn't get it!!!! 

I like it when my mom and my "da" read to me. My favorites are the Little Critter books.  I am learning how to write words in school, and one day I will write a long letter telling everyone in the world that just because my body is different than theirs doesn't mean that I can't play or go to school just like they do! 

You're probably wondering about my body. When I was born, the doctors noticed that it was not like other babies'. They told my parents that I had a very very rare condition called VACTERL (the letters stand for the different problems I have). Though in all sorts of ways I'm very much like other five-year -olds, here are some of the ways my body is different than theirs. 

  • To begin with, I was very blue, since I wasn't breathing. Because I couldn't breathe on my own, I very quickly had a machine buddy that did my breathing for me. It's called a respirator, and it doesn't hurt at all. 
  • You probably have 2 kidneys, right? One on the right and one on the left side of your body. Not me. I have no kidney on the right,  and one-and-a-half kidneys on the left. When my bladder is filled with urine, it backs up to the strange kidney and hurts a LOT, believe me! 
  • My back has some pretty odd curves in it. One is called scoliosis (sort of like the letter "s") and the other is called kyphosis (makes me walk bent over...not fun). Do you know what a vertebra is? It's a little bit like a Lego, and you should have a  bunch of them that lock together to form your spine. I'm not so lucky, since I'm missing a lot of them, and those that I do have are all broken up into bits and pieces that don't help me very much.  The doctors tried to help me by putting a metal stick in my back, a kind of bionic spine, but I was only two years old at the time and the stick popped right out through my back and caused a big infection. Don't worry, that does NOT usually happen, and I hope that it NEVER happens to you, because it really hurts.
  • I am missing the front half of my rib cage. The ribs I have on my back are very strange, not like yours at all, and the ones that come around on the front are pointy and stick out. I look like I need to wear a bra, and as I told you, I'm only 5-years-old!!!! 
  • My lungs are babysize because of my ribs and my curved back. I just might get a set of Titanium ribs so that my lungs can grow. Then it wouldn't be so hard for me to breathe. Keep your fingers crossed.
  • My thumbs are very unusual. My right one doesn't have a tendon in it, so it doesn't bend. My left thumb didn't work at all until I had a neat operation so that I could pick things up like you can. It works, though of course it still doesn't look like yours.
  • I have something going into my tummy called a g-tube. The part of it that you can see is called a button, because it looks very much like just that. You see, eating has always been very hard for me and it makes me very tired. Even though I do the best I can, really, people tell me that I eat too slow, or that I don't eat enough. With the button I can get extra food right into my tummy without it ever having to go into my mouth. Isn't that neat? 
Sometimes at school, I get teased because I have to leave kindergarten to go eat. Other times kids tease me about my back. I not only walk hunched over (because my left leg is longer than my right), I limp, too.  I do not like being teased. It makes me cry. I thought that if I told you about myself, you could tell other people and then if they see me maybe I won't get teased all the time. 

I had a friend in school. Her name is Jasmine, but she doesn't talk to me as much as she used to, and I don't know why! I have lots of other nice friends but some of them aren't so nice all the time! One thing that I do is Daisies. That's Girl Scouts for kindergarten! All of the girls in my class are in Daisies too, and I like it a lot. We do neat stuff, like going to the pumpkin patch to go on a hayride and pick pumpkins!! THAT was a lot of fun!!!

I hope that when I grow up I'll be able to help people. In the meantime, I hope that you've enjoyed reading about me. Don't be too sad about my problems, because as you can see, there's a lot that I can do, and I have a lot of fun.

More about VACTERL

To the frog ponds
To write to Brianna
To the site map

Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman COllege, CUNY
Bronx, New York 10468

Last updated: November 14, 2004