Firstly, I really appreciate this site. I am currently 24 years old, almost 25. Until now, no one has ever actually given me a name for the birth defects I was born with. A friend called me today and told me he met someone who had similar looking defects to mine, so I started to research it with the name he gave me: Amniotic Banding Syndrome. It’s such an amazing feeling finally to know that there are others with the same conditions. I had always been told that my problems were just called “birth defects.”
Here’s my story:
I was born November 7th, 1981. According to my mother, my birth was going smoothly with little pain or discomfort…until my heart rate started falling. At that point, they sped up the birth. No one had previously detected any problems via ultrasound.
Once I was born, the doctor discovered that my right hand, left foot, and right ankle had some problems. My ankle had a banding looking scar completely around it. My left foot was missing it’s big toe and my right hand was webbed and was missing digits. My hand was missing almost the entire thumb and was missing about half of the ring finger, middle finger, and index finger, all of which were webbed.
My first of many surgeries was within the first few days of my life. Doctor Virchel E. Wood at Loma Linda University in Loma Linda, California performed the Z-Plasty surgery to release the pressure on my ankle, from which I still have the scar all the way around my ankle.
The next surgery was to separate my webbed fingers. I was approximately 5 years old. I had all of my fingers on my right hand webbed except my pinky, which was still fully intact and functional. The surgery also amputated a small nub of skin that had been left hanging on the tip of my ring finger. A skin graph was done from the crook my right arm to replace some skin on the insides of my newly separated fingers.
At the age of about 8 or 9, Dr. Wood performed the Distraction Augmentation Manoplasty surgery in an attempt to lengthen my thumb so I would have more use of the hand. The surgery was successful. Now, Dr. Wood warned me and my mother prior that most people who had the device installed, encountered sever pain from it; however, I never had more than a little discomfort with it, other than pressure and almost a “tingling” sensation when the screw was turned daily. When the device was removed, my doctor performed a bone graph from my hip and inserted into my new thumb. Keep in mind, that this procedure is meant to lengthen the body part, but my right thumb is still without a joint and is perfectly straight. I’d like to look into getting perhaps an artificial joint installed in it in the future.
I have had no more surgeries since then. I also have other symptoms of the syndrome, which I never knew were related to the defect, such as what I think are small Hemangiomas. I have very tiny red dots, 2 on my face and 1 on my left wrist that have always been painless, but permanent and never knew what they were from. They have not diminished at all with age, but do not get in the way of anything.I also have lymphedema in one joint of my left index finger.. People always asked me why that joint was swollen. I just always figured as a kid, I dislocated it or something and it just healed incorrectly.
Overall, thanks to Dr. Wood, I have lived a completely normal life. Although without the Distraction Augmentation Manoplasty, I think I would have had little use of the hand. I was teased as a kid of course, but I think it only drove me to prove everyone wrong. I even had adults underestimate me. I wanted to play the flute as a kid, and with missing most of 3 of my fingers, my band teacher basically told me at 7 years old to “not hold my breath” or to think about playing something different, like the drums. Two years later, I was the best in his class.
I have also been in martial arts since the age of 6. I have a first degree black belt in Tae Kwon Do, and a brown belt in Itosu-Kai. I have handled weapons fairly easily as well in competitions. The only bit of difficulty I had, was twirling the tonfas (wooden police-like batons) and keeping full control of the weapon with my right hand. Although, being born with the syndrome, my body has learned to adapt and adjust.
Today, strength tests have shown my right hand to be just as strong as my main-use left hand.
If anyone has any further questions or concerns, please email me and I’ll be happy to help with what I can. If anyone has any children who has the condition and if they need someone to talk to or ask questions to, please let me know!