My Experience with Arthrogryposis, Spinal Scoliosis and the Harrington Rod

This article I saved as a separate piece because of what it will entail. Plus, I feel it very necessary for a parent with a disabled child who has Arthrogryposis to make an informed decision regarding major back surgery. Of all the surgeries I personally went through, the major surgery used to correct my scoliosis had to be the most trying for me. My parents as well had their own feelings regarding my surgery, and their own personal effects.

Now, please keep in mind, we are in 2007 and major back surgery has come a long way. My purpose here is to convey that even though things have changed, surgery such as this can still create a big physical and many times emotional change for a child or even young a adult. Not all results are typical for everyone.

Scoliosis is a curvature of the spine at varying degrees depending on the person. Noticeable body differences are shoulder blades- one being higher than the other, ribcage protruding out on one side more than the other, leaning over to one side. For many there may even be noticeable back pain, hip or shoulder pain all stemming from the back. A child or young adult could even have noticeable dimples along the spine, or color changes on the skin. Scoliosis is something that needs to be checked by a doctor and it is very important to weigh all options. Today, there are many more options than what was available to me. In this article I'm just going to discuss my only option, which was the Harrington rod back in the '70s.

In 1979 I was ten years old. I had grown a bit over 4 feet tall. By now I had progressed to using a wheelchair full time. But, there was a major issue that needed battling. My scoliosis had progressed to the point that I was leaning so far to the left, I was horribly uncomfortable. I was having an extremely hard time sitting and found it easier to lay on the living room floor. I was grateful my mom liked plush carpeting. My mom even started needing to put a thick book in my chair on my left side to try and help me sit up. For me, I noticed breathing was becoming difficult.

An appointment was made at the children's hospital 3 hours from our home. I was immediately given x-rays, and tests only to see my spine was definitely shaped like a perfect "C". My ribs were crowding my heart and lungs. The concern for me, and anyone with severe scoliosis, is the effects it can have vital organs such as the heart. It was told to my parents that major back surgery was necessary. I often wondered if my parents asked for other options, but I was never told. Again, as a child I was left out of the loop until I was told I would be admitted to the hospital.

A few weeks later I was admitted. Blood test after blood test was done. The hard part, I have always been horrified of needles. For some reason, unlike my other surgeries, this one really scared me, to the point I begged to go home. My parents would come to see me of course, but they would be 3 hours away aside from that. I was still horrified, and if I couldn't go home, I desperately wanted my dad to stay with me. He was strong, and I knew he would let no one hurt me. However, the night they left me I cried myself to sleep. I kept waiting to see my dad to come around the corner.

The day of my surgery my parents were there. I was given a pre-op medication to relax me. Then, it was time. My dad lifted me on the stretcher, and walked with us down to surgery. Awhile later I was on the table, and a gas mask was placed over my face. I cried because of the odor and the awful feeling. From there, the rest is history.

I was given a Harrington Rod which was invented in 1953. A Harrington Rod is stainless steel, has two hooks- one hook is placed at the top of the curvature, the other hook placed at the bottom of the spine. The stainless steel rod is ratchet style so it would only move in one direction. In my spine, screws were inserted as well as mesh through my ribcage to hold the rod.

In my case I needed 3 separate surgical steps. However, my surgeon decided to push things along and attempted to more than I could physically handle. Because of this I lost too much blood and slipped into a coma. From there I was moved to ICU. Unfortunately, I was in a coma for most of a year, falling behind in school, and my family not knowing if I was ever coming home.

One day, I finally woke up. I could barely stay awake, but I did long enough to hear the heart monitor, I saw I was on life support and had a chest tube. I had an IV in my neck, and blood transfusion tubes in my ankle. I was horrified.

A few months passed and when I was strong enough, my spinal surgery was completed by another surgeon. I spent was seemed like an eternity in traction, then a body cast. Sitting up was out of the question. I needed to be cathed in order to use the bathroom, and could only have liquids. I went into this surgery feeling like a "normal" ten year old, I was now going on 11 looking like I was 60. My mom was very upset.

Correcting my scoliosis may have been needed, but it took so much from me. When I was finally allowed to sit up, I felt very sick. After laying for almost a year, I was so dizzy, my body had more atrophy. But the worst part, I could no longer get my hands to my mouth. I was sitting so straight I could not bend to reach my mouth. I could not even push my own wheelchair. My independence it seemed slipped away. What antagonized this more was the rehabilitation after. I was put in situations like eating to get me to use my hands, or getting me to try and write or type. As a child I just felt humiliated. I knew that I was not going to be the same.

When I returned home I became very depressed. It's actually not uncommon. Many who have undergone this procedure develop depression. It's one of these times that it is important to work with your child, talk to your child and above all let your child know they are still loved the same. My mom tried even though we both were faced with extra challenges. For months my bladder was quite weak, and making it to the bathroom was quite difficult, and now I needed to be fed.

As my parents learned over time that I had lost a lot, but I started learning new ways of doing things for myself that did not require me having use of my hands. These things I will discuss in my next article as I'd like to talk about what it was like being disabled and going to a public school. Fitting in for a disabled child is not always easy.

I have included with my article links to sites that I hope will be beneficial to parents who have a child with Arthrogryposis Multiplex Congenita. Scoliosis is a huge factor in dealing with this disability. Please make informed decisions when it comes to correcting this part of your child. I'm not trying to "scare" anyone, but sometimes it helps to know others who have been through surgery to correct scoliosis. Today, there are so many options available for correcting this deformity, weigh them all, include your child in decisions if you can. Most importantly ask questions about scoliosis.