My life with Accidental Amniotic Band Syndrome

Although this condition can happen naturally, mine was a bit of a screw-up. For those of you who don’t know, Amniotic Band Syndrome is a condition where the bands of tissue surrounding the baby become entangled with the baby. This cuts off circulation to parts of the body such as fingers and toes which results in the limbs dying, not growing, or being squeezed off. There are some situations where the bands can wrap around the neck or other parts of the body and become fatal.

My mother was 37 when she became pregnant with me. In the 90’s this was considered an extremely old mother and must be extra cautious with the development of the child. Since there are studies that show the older the mother, the more issues can occur in the pregnancy, her doctor insisted she do an Amniocentesis test. This test is designed to remove a small portion of the amniotic fluid with a needle which is then tested to obtain valuable information regarding the babies health. After talking to a few other mothers who have had this test, apparently this was the “ hot test” to have back then and everyone was doing it.

The procedure itself is pretty standard, a syringe goes into the uterus, fluid comes out and BAM, we have all the information we will need. However, the doctor who performed my mother’s exam had an extremely difficult time getting any fluid out. He put the needle in about eight times before getting a second opinion. When the second doctor came in he looked horrified and said, “you are using the wrong needle, it is not long enough.” The second doctor then used the proper instrument and my mother was in and out shortly.

Fast forward a few months, I am not moving in the womb. No kicks, no turns, nothing. My mother went for another ultrasound and I was very much alive and well and my parents were told, “ this is normal, do not worry about anything.” The specialist did mention I looked pretty big and chunky so the birth may be a challenging one, but only because I was fat and not any other issues. So the day comes and its time for little chonky Taylor to be brought into this glorious world, but no one expected this surprise!

I am born, covered in loads of tissue and bands. My left foot is completely turned around like Regan’s head from the Exorcist. The nurses clean me off and everyone was screaming. My mother is exhausted not knowing what is going on and my father is on the verge of fainting. According to him, the first thing they did was complete twist my foot around with their bare hands and put it in a cast. Because my bones were still super soft, this was apparently painless. My dad watched as they carried me to surgery right away. No one gave any explanation to my parents except someone would be in soon to talk to them.

The reason I was whisked away was to remove the banding from my body and to assess the damage. I must say, I am extremely lucky. I was born with a thumb, a pointer, and my cute little nubbins which were once my middle finger, ring finger, and pinkie. They placed screws in my fingers so the bones would grow upwards and screws in my toes on my left side. My left foot is the club foot which is a size five and my right is a size 8. Talk about the struggle of buying shoe! Besides the physical abnormalities, I was a healthy and very chubby baby. I learned how to walk, write, play the piano, anything I wanted to! with the exception of monkey bars, those things are the devil.

Of course, there have been some complications in my life, but the majority has been completely normal. Sure I had to be creative with the way I hold a pencil or throw a dodge ball but to me, this is my normal.

I am part of the War Amps Champs Program in Canada which has given me many amazing opportunities. I have met many people in my life with the same condition as me and they don’t even know they have it! They were just told it was a birth defect and nothing else. There are several things that mimic my condition and it is important to ask questions.

People say these types of things are rare but I truly feel they are “rare” because no one talks about it. Now with the advances of technologies, you can usually tell if this is happening in the womb. I have met many parents who were given little to no information about this condition and it is truly heartbreaking that they do not know what is going on. One thing I know for certain is we as humans are so adaptable and can overcome really any obstacle in our path. Differences make us unique and I am proud of who I am today and what I can achieve. Who needs fingers anyway!