Monday, February 8, 2010

What is Amniotic Band Syndrome???

So what exactly is ABS and how did it affect me? It is a set of congenital birth defects believed to be caused by entrapment of fetal parts (usually a limb or digits) in fibrous amniotic bands while in utero. Before I was born the body parts that shows signs of ABS (arm, fingers, toes, etc.,) were caught up and entangled in string-like bands. This caused abnormalities that were present at birth.
With Amniotic Banding no two cases are exactly alike. There are several features that are relatively consistent: syndactyly (webbed digits), distal ring constrictions, deformity of the nails, stunted growth of the small bones in the digits, limb length discrepancy, distal lymph edema (swelling), and congenital band indentations. ABS affects approximately 1 in every 1200 live births. It is also believed to be the cause of 2% of all miscarriages. Recent literature supports that ABS occurs more often than once thought. Up to 50% of cases have other congenital anomalies including cleft lip and palate and clubbed foot deformity. Hand and finger anomalies occur in up to 80%. I was born with all of these. A cleft lip and palate is basically a giant hole in my face between my mouth and nose. The results of the upper lip and upper jaw not being completely developed, leaving a sizeable gap in the middle of my face. I am missing parts of my ring finger and all of my middle finger on my left hand. My right hand has all of the thumb and index finger but missing most of the other three fingers. On my right leg, just below the knee was a little cartilage filled foot but no lower leg bones to support it. So this was amputated, shortly after I arrived at University of Michigan Hospital after my birth. In some cases a complete “natural” amputation of a digit(s) or limb may occur before birth or the digit(s) or limbs may be necrotic (dead) and require surgical amputation following birth.
I was fitted for my first prosthesis at nine months old. I took to it pretty quickly because it gave me the freedom to keep up with the other kids. At the age of 15 months I was walking on my own with help from the prosthesis. Even to this day I would much rather wear it then to leave it off. It gives me the freedom to move when I want to and without a great deal of pain and discomfort.

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