My daughter, Holly, was born in 2000 with Amniotic Band Syndrome and clubfoot. Here is our story….
My water broke in the 32nd week of pregnancy, but I did not go into labor. I was placed on bed rest at the hospital and was given a steroid to help her lungs develop quickly in case I did go into labor. My doctor decided to induce labor in the 34th week to prevent the risk of infection to Holly. I only had one sonogram two days before labor was induced, but the technician did not see the ABS. Holly was born 6 weeks premature with deformities on all four extremities. The steroid did help her lungs develop, because she was only placed under an oxygen tent for 5 hours and then was able to breathe room air.
Her right foot was the most severe, and was diagnosed as a club foot. The band had wrapped around her leg slightly above the ankle, and she does not have toes on that foot. Her left foot was the least affected, with only her toenail missing on the big toe. Her left hand is what we call her “Mickey Mouse hand”, because she does not have a middle finger. (Her orthopedic surgeon had informed us that Mickey Mouse only has three fingers and a thumb) At birth, the left middle finger was only a nub, not even to the first knuckle. She had surgery to remove the middle finger nub before she was 1 year old. On her right hand, the middle finger is slightly shorter than her other fingers and does not have a fingernail.
She had a number of surgeries all before the age of 2. To correct the club foot, we visited the orthopedic surgeon once a week from the time she was three weeks old until she was three months old. Each week the orthopedic surgeon would slightly stretch her foot, more and more outward, and would cast it to keep it in place. Eventually, after three months, the foot was incredibly improved. Then, Holly had to wear a corrective shoe and brace device at night to keep the foot from turning back in. She had to wear this until she was about 14 months old. She also had plastic surgery to release the band indentations on her ankle and fingers. For her final surgery, the surgeon cut her Achilles tendon. This was done to have it grow back and to provide more flexibility to her ankle.
Holly is now 6 years old, and is an amazing child. She has adapted so well to her deformities that most people don’t realize there is anything different about her until they have spent a few hours with her. She has played soccer and T-ball, and received the P.E. Award in kindergarten. In fact, most of the time she out-runs the boys in her gym class! I know the years ahead will hold many jokes and cruel children making fun of her, but I try my hardest to prepare her for that. I, along with my family, constantly tell her that God made her special and shower her with love. I encourage her to be confident and not hide her deformities. I try to set an example for her on how to respond to children whenever adults ask me “What happened?” I simply explain Amniotic Band Syndrome, and use a tone that shows that I am completely comfortable talking about it. Whenever I have witnessed children asking her about it, she simply says “I was just born like that” and moves on.
I thank God each and every day for giving me the joy of being Holly’s mother. I truly believe that she will one day be an inspiration to other children and adults with limitations.