On October 25, 1989, I was born with a birth defect called Amniotic Band Syndrome. Amniotic band syndrome, also known as ABS, is rare and so little is known about it. I want to explain what ABS is and its possible causes, then the varying effects of the condition, and, last, the current diagnostic trends and treatments for it.

A baby is surrounded by amniotic fluid, contained in the amniotic sac of the mother’s womb. ABS occurs when bands of hardened amnion wrap around the developing fetus’s body and constrict growth, especially of a limb. It affects about 1 in 1,500 to 1 in 15,000 live births, according to a 2003 entry of the Journal of the European Academy of Dermatology & Venerealogy on the condition. There are no known causes for ABS, and the condition affects both boys and girls. No correlation has been found between it and heredity, nor is it a product of drug or alcohol abuse during fetal development.

A wide range of problems stem from amniotic band syndrome. According to an article, ABS is supposedly the cause of 178 of every 10,000 miscarriages. The deformities resulting from ABS include cleft lip, clubfoot, congenital amputation, and deformities of the lungs, spine, or abdominal region, as well as skin disruption and limb necrosis. An article on WebMD states that the severity of the deformities is “extremely variable and may depend upon the time of amniotic band formation during fetal development.” Most ABS babies are born prematurely and with low birth weights. There may also be neurological defects associated with amniotic band syndrome.

Lastly, and most importantly, ABS is hard to diagnose prenatally. The bands can be detected through ultrasound, but only if they are thick enough. Most often ABS is found indirectly through swelling of the affected limbs seen during an ultrasound.

Like many ABS babies, I was only diagnosed after I was born. There was no way to correct ABS at the time (in 1989). In 1997, a surgeon in Tampa, Florida, pioneered an in utero procedure that could be used to remove amniotic bands from around the limbs of the developing fetus. The surgery has been performed numerous times since its first success, as recently as June of this year in Melbourne, Australia, as reported by the Sydney Morning Herald newspaper.

I was lucky to have no major physical deformities or mental impairments thanks to ABS. I was born six weeks premature with only three skin disruptions, one of which nearly caused the loss of my left foot. Six months after I was born I had corrective plastic surgery to hide the damage done to my ankle. I hope they do, someday, find a reason for, and a more effective way to detect, amniotic band syndrome.