Holly’s ABS Story

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.

After her final surgery, she went back to her orthopedic doctor once a year for three years. She has only had minor problems with her foot since then. Because the make-up of her right foot is so unusual, she does not have the greatest circulation or feelings in it. We have to keep a very close eye on her foot to watch for splinters, cuts or bruises (similar to how a diabetic has to care for their feet). When she was 5 years old, a new pair of shoes gave her blisters on the back of her foot. The blister on her special foot became infected and the infection spread throughout her entire foot. Her foot swelled to twice its normal size and became impossible for her to walk on it. The doctors were concerned that the infection was so severe that her bone may have become infected, so they ordered an MRI. It was pretty hard for a 5 year old to sit completely still in a dark, loud machine for 45 minutes. Thankfully, it showed that her bone was not infected. She was given intravenous antibiotics and the infection started to clear up in about 3 days.

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.

Updates:

**At 6 years, Holly 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!

**At 8 years old, Holly has become an extremely athletic child. She has participated in cheerleading, soccer, basketball, and now coach-pitch baseball. She excels in every sport she tries, and amazes her coaches with her ability and drive. She recently spent a week away from home at Girl Scout camp. When I picked her up on the 5th day, I witnessed one of her new friends telling her mom about Holly. The little girl said, “Mom, I want you to meet someone. This is Holly and God made her special. She was born without any toes and she is very special”. Holly told me they discussed her birth defects a number of times and talked about how “special” she was.

Even though Holly knows she is special, she knows she will always be different from other children, too. Just the other day, Holly asked me if her special foot would ever turn into a normal foot. She had all the hope in the world that it was possible. When I told her that it most likely would never be possible, she stated how sad she was that she would never be able to wear flip flops. I am sure it doesn’t help any that I absolutely love flip flops and would wear them year round and with every outfit if I could. As a mother, you want to do anything in the world to take away your child’s sadness. I sometimes wonder if I should stop wearing flip flops, to help take away some of her sadness. It is situations and conversations like these that I have with my daughter that are the toughest. I find it is best to hug her, comfort her, and point out a very positive quality about her that not many other people have. Now if only I could find her a support group of people who can’t wear flip flops, we would be set : )