Hi, my daughter Ciara Diane was born on Aug. 4 1995 with Amniotic Band Syndrome that effected only her face. She was born with a Tessier 5 Cleft lip and palate. She has had 13 surgeries and is due for plenty more. Most of her surgeries were done at Loma Linda Hospital in Cali, but we moved 4 yrs ago and she is now seen at Shriners in Ohio. Although, Shriners has not yet done a surgery, I am very excited on their approach to it all. They want to do as much as they can in one shot, and let her be done till shes an adult, Ciara loves that idea so she doesn’t have to go through it every year like she has been doing. We are do to see the doctor after the first of the year and will know when surgery is then.
I remember the day I found out I was pregnant, it was not planned, but I was very excited. A few days after I found out, I started bleeding, I went to the doctor, they did an ultrasound and told me I was having a miscarriage. I bled for several weeks and after many dr appts. she was still holding on. (I was very sick throughout my pregancy). On Aug 3, I went into labor, and finally after 22 hours of labor, Ciara was born. The doctors quickly took her away and tried to explain to me about her birth defect, I was very confused, I thought I did something wrong. After 8 hours or so, I finally got to see her (everyone else in my family had already seen her at this point and warned me of her appearance), I was in shock, again blaming myself, but after holding her, I was completely over the shock and fell right in love with her.
It wasn’t until we took her to Loma Linda when she was 3 weeks old that I learned about “Amniotic Band”, and I was so relieved. Ciara had her 1st surgery when she was 3 months old, and 3 more that year. She has had many struggles in her life, not only with her surgeries, but she is partially blind in one eye and wears glasses, she has had lots of problems with her ears and has had many sets of tubes. The next step is braces and dental work. She is now at the “tween” age and is having a difficult time at school, as we all know how mean other children can be. But non-the-less, she is a strong, normal, coordinated, beautiful girl who has changed my whole outlook on life. I still ask god “why my child”, but I believe that he only gives us what we can handle. She is here for a reason, she is my angel….