Born with Arthrogryposis Multiplex Congenita

My name is Lori Schmitt, and I am coming to you with the first, of hopefully several more articles, on growing up and living with a disability known as Arthrogryposis Multiplex Congenita. My disability, Arthrogryposis, is characterized by many features that have have effected how I have grown up, and the many challenges I have faced. Arthrogryposis Multiplex Congenita is a complex disability, so I would like to take the time to use this first article to explain the symptoms. I am hoping that I can shed light on this disability, and possibly assist parents who have a child with Arthrogryposis.

Arthrogryposis Multiplex Congenita has many factors. Each person affected is affected differently, some severely, others hardly at all. 1 in 3,000 live births have Arthrogryposis.

When I was born in 1969 Arthrogryposis was hardly even heard of. It was an extremely difficult birth for my mother and after being in labor for 24 hours, her doctors finally decided to take me by C-Section. Much to their surprise when I was taken from my mother's belly, I was a little 3 pound baby with some very distinct deformities. Before my mother was even allowed to see me, I was whisked away and isolated from the other babies in the nursery. My mother and father left with no answers.

After a week of my mother begging to know where her daughter was, a doctor finally came in, and told my parents I was alive and they believed I had a rare disability known as Arthrogryposis. They asked my mother if she wanted to even see me, after all, I was deformed and probably would not live. My mother and father both were quite angry by these comments and demanded I be brought in so they could hold me. Within a few hours a nurse finally entered my mother's hospital room carrying a little squirming bundle, wrapped in a blanket.

My mother took me in her arms, and unwrapped me. Her only concern being that I had ten fingers and toes just like my two sisters. My parents saw my deformities, but looked passed them. They demanded answers so they would know how to care for their child with Arthrogryoposis. The doctor's tried convincing my parents to put me an insitution as I would more than likely die in a few years, but again my parents demanded answers, and wanted to know of any treatments for my disability. So, my life began.

Arthrogryposis Multiplex Congenita has many characteristics, the most obvious being the contractures. In my case, all of my joints were affected. My arms, elbows, wrists, hands, fingers, legs, knees, and my feet and toes. My arms cannot be raised beyond chest level, and my fingers are intertwined, my thumbs resting across my palms. My legs are permanently bent in a sitting position, my feet unable to wear shoes. I also have considerable muscle weakness. This was how I was born and despite some extensive surgeries to help improve my deformities, this was how I stayed. I would like to discuss some of my more extensive surgeries later on. My mother knew because of these deformities I would require constant care, but she and my father were ready.

Before being taken home from the hospital in 1969 I was baptized in case I did not have a long life. My mother's sister Bev was proud to be my Godmother.

Afterward, my first baby picture was taken. In my first photograph I was unable to hold up my own head, but this photo is so special because even though you cannot see all of her, you can see my mom's hand holding up my head.

Then, finally I was home. My sisters curious about their new baby sister. But, not curious because I had deformities, curious because I was a new baby. They carried me around and played with me as if there was not a thing wrong in the world. The sad thing for my parents though, they knew that many tests and surgeries were ahead. They knew it needed to be done.

As I began to grow, some of the deformities presented an urgency to be fixed. I had scoliosis that began to grow worse. My spine actually shaped like a "C". My head began resting on my left knee because I was bent over so far. On top of that, my hips were spread so far apart, I was now unable to sit. The life of my parent's new baby would be changing soon, and as I started to grow, my parents now needed to start looking into those much needed tests and surgeries.

In my next articles I would like to touch on the treatments, and surgeries that I underwent for Arthrogryposis Multiplex Congenita. Not all treatments are right for those who have Arthrogryposis, but it can give an idea of what is out there. Also, my outcomes from my surgeries for my disability are not typical. Each person born with Arthrogryposis Multiplex Congenita is different and that is very important to remember.