My Experience with Treatments and Surgeries for Arthrogryposis Multiplex Congenia

Welcome back. Hopefully, you had a chance to read my first article on a disability known as arthrogryposis multiple congenita. In that article, I explained what arthrogryposis was and how it affects those with the disability, and what it was like for me being born with arthrogryposis. In this article I would like to talk about the treatments, and surgeries that are typical for arthrogryposis. Keep in mind, however, these treatments and surgeries for AMC are not right for everyone.

As parents who are faced with a child who has a disability, decisions need to be made as to what treatments will follow. My mom and dad were bombarded from the start by doctors saying what needed to be done, and when. At that time my parents requested to be referred to a hospital that specialized in children with disabilities. After searching many options a referral was given to them for a hospital and rehabilitation center three hours from our house.

Upon arrival my parents were given a brief list of treatments typically used to correct deformities, or used to try and better certain deformities for Arthrogryposis. These treatments include physical therapy, casting of affected joints, and orthopedic surgeries. At times emotional support is offered to children who may have a hard time dealing with their condition.

My very first surgery was completed when I was 5 years old. My hips were spread so far apart that sitting was almost impossible, unless it was a surface that had no arms. The surgery entailed putting metal pins and plates into my hips. As I grew, these metal parts would eventually be overgown by bone and basically become a permanent part of my body. With this surgery, my clubbed feet were also corrected. From there, I needed to endure a series of casts. What was hard was being moved around as the casts for this procedure usually go from the child's belly to their toes. I remember my dad trying to carry me around.

After what seemed like a life time, the casts were removed. My mom was very pleased to finally be able to give me a bath. As a child I was just happy to have my legs back. But, as a child when something is corrected, even for the better, it can be a tough to see your body different. For me, a small part of my independence was diminshed. Sometimes I wonder if parents realize how these affect their disabled child.

Before my hips and clubbed feet were fixed I was able to get around on a wooden scooter my dad had built me. It had 4 wheels, and a seat covered in sheep skin. I was so happy because I considered myself walking. I went every where on my scooter. I walked up and down the sidewalks, and around the house. I actually wore my shoes out. However, things were different when the casts were removed. My dad put me on my scooter after my recovery, but I could no longer make it go. My balance was gone, my legs much more stiff. It was a very hard day when my scooter needed to be put away.

From there I was fitted with my very first wheelchair.

For parents with a child undergoing surgeries that will change a part of their body, it's important to talk to your child. Help your child understand how they're going to change. Most importantly, talk to your child and listen to their feelings on how they have changed. Treatments performed are done to improve quality of life, that's true, children however can at times only see frustration.

Because AMC causes joints to be fixed and causes muscle weakness, physical therapy is often times in conjunction with surgery, and used to stretch those muscles, and used to main some amount of flexibility. I remember as a child being put down on mats and having to have my legs stretched, and my fingers and hands stretched. Sometimes though, this can be quite uncomfortable and painful, especially when your joints are unforgiving. I don't think I really ever made it through physical therapy without crying. My hands suffered the most. I was always happy to have a hot bath when it was over. My physical therapy stopped however when I was older, my parents realized that for me it was not improving what I had.

As time progressed with my therapy, and I grew bigger, my arms were fitted with splints. These splints were made of a hard plastic and went from mid-wrist, over my elbow, then part way up my arm. To add tension, rubberbands were used where my arm bent. The rubberbands could replaced on the splint as needed. The splints are used to help with muscle control, and to help maintain some joint movement. I did not mind the splints for my arms, but refused to wear leg splints. Now, splinting may not work for all children.

The hardest part as a child with a disability is when the adults and doctor's know best. Sometimes children are left out of decision making processes and this can actually cause more trouble. At one point I was made to wear heavy, metal leg braces. I never understood why because I was never going to walk. I became stubborn when it came to putting on these braces. It was not a decision I was part of, and I was not happy with that. Eventually, I was listened to, and the leg braces were set aside. I cannot stress enough the importance of communication with your disabled child, especially if they are capable of relaying how comfortable or uncomfortable they are.

Thank you to those who have read my article on treatments and surgeries that are typical for a child with arthrogryposis. These treatments and therapies are not always beneficial for all children with arthrogryposis. It is important to explore options, and maintain good communication with doctor's and your disabled child.

In my next article I would like to discuss a major surgery I underwent that completely changed my life. I'm writing on this major surgery seperately as there is much involved. Plus, it is a major surgery that should be greatly considered before approaching it with your child.