My name is Cindy, I was born in July of 1971. I am 37 years old now.
I was born with severe congenital birth defects to my left hand and legs caused from Amniotic Band Syndrome.
When I was born my mother was told that there were issues; the doctor actually unwrapped a black string like object from around my fingers on my left hand in front of her. The string came out from between the center two fingers which were webbed together with a nubbin protruding atop one finger. My left foot was severely clubbed and the big toe on my right foot was deformed. I also had a skin defect that looked similar to a peach pit on the inner side of my buttocks cheek.
Doctors were worried about what they had found so they contacted a specialist with internal medicine. The biggest issue was to make sure that the internal organs were functioning properly. One of the happiest moments my mom had was when I actually was able to go to the bathroom on my own. This told doctors that internally things were developed correctly. There were no additional test done that I know of. My mother was told to take me to Blodgett Medical Center in Grand Rapids, Michigan to see Dr. Albert Swanson where I was treated for my club foot and left hand abnormalities. I have had two surgeries on my left hand, one to separate my second and third finger from its web and then another to skin graft the small nubbin onto a large opening in the third finger. This happened before reaching first grade. I currently have developed carpal tunnel and arthritis in my fingers. A cast was put on my left leg and eventually turned into a orthopedic shoe and brace that was worn before starting school. Orthopedic shoes with a lift were worn through elementary school and eventually I was able to wear regular shoes going into 9th grade. Unfortunately the leg length discrepancy (25mm) was not corrected when wearing regular shoes. I walked with a slight limp and started having back issues when I started working in a factory. I played sports in high school and lived a pretty normal childhood other than having Charlie Horses in my left calf, some back issues and dealing with the occasion jerk that liked to tease people. Several people I went to school with never noticed my hand and some even questioned when I hurt my hand. They saw me for who I was not what I looked like; they were great friends and I will always remember them. I look at as I am one of a kind and no one can ever take that away from me.
Upon graduating and starting the work force (at about 19 yrs. old) I became extremely ill. I had a large mass hanging from my inner buttocks cheek (the peach pit looking area) that developed rapidly overnight. After 6 months of draining and healing then on the verge of death from such a high fever; the doctors finally found that I had a hole in my intestinal track that was leaking into a cavity causing the mass. They explained that it looked like I had a second stomach that had to be removed right away. They could not say why it developed or if it was an internal birth defect. They called it a perrianal abscess; I had the surgery and have been fine since.
Soon after I became pregnant and have had two healthy beautiful sons who are now 15 and 16. I was extremely worried that they may have the same issues as I did so the doctors did keep a close eye on ultrasounds etc. through my pregnancies. Thankfully they have never had any issues come up.
I worked for 15 years in a production setting working my way from a temp to a Supervisor. In 1999 I could not bear the pain I was in from walking on the cement floor. My ankle had slowly changed through the years causing it to collapse. I was literally walking on the inside of my foot with the bottom skin twisted about an inch or two to the top of my foot. I saw a a specialist Dr. Bohay at Shoreline Orthopedic of Grand Rapids. He did reconstructive surgery on my ankle and Achilles lengthening in 2000. The pain was excruciating; in time my foot looked a lot better. After months of riding in a wheelchair and learning how to walk again things did get better but the pain always remained. A year later I needed to have a debriment of my ankle and then the following year another debriment and calf lengthening. The last two surgeries were not as extensive but helpful to give me more range in motion when I stepped. I have spent many hours in therapy and pursuing effective orthopedic inserts and shoes. I have to buy shoes every five weeks because my foot is twisting into a C-Shape and there is nothing that can be done to fix it. I have a lot of arthritis in my ankle that causes me a lot of pain; the more I walk or stand the worse it is. As I have gotten older and left the work force I have had to minimize the amount of steps I take in a day to help reduce the pain I am in. I take pain medication daily and I see a chiropractor every Monday so that he can adjust my hips and back to decrease the amount of pain I am in. The limp I walk with from the leg length deficiency causes my hip to pull out of place an in turn causes a domino effect to the rest of my back. Sometimes I have to be adjusted up to three times a week. I have developed Thoracic Outlet Syndrome in my shoulder muscles because of the stress my muscles are in all the time. As I get older it is getting progressively worse. I do the best I can but it is at my pace no one else’s. Sometimes if I over do things I pay for it that night or the next morning. I guess we all learn our limits in time but I seem to keep having to learn that lesson way too much. I like to do projects and stay active so that my joints get their exercise so that the old saying “use it or loose it” applies to me.
I want to thank everyone for sharing their stories on this site. Especially the originators and their young son that has been affected by ABS. You have reached out to many people to bring us together for encouragement and a helping hand in some cases. Thank you for your efforts and I wish you all well in your future.