Hi! When I was 13 weeks pregnant I was told that my precious little girl had anencephaly caused by Amniotic Band Syndrome. ABS is where the inner layer of the sac that the baby is in ruptures causing bands to wrap around the baby causing amputations or worse. Taylor got the worst of it. The bands actually wrapped around her head causing her to have severe facial abnormalities. She is also missing the top part of her skull which is why they thought she had anencephaly. The definition for anencephaly is born without a head. My doctors asked if I wanted to terminate the pregnancy but we could not give up on our daughter! Well, she made it through the pregnancy and I had her on March 24, 2006. They told me that I had a maximum of 2 hours with her. We were so devastated. Even with all of her problems she was the most beautiful baby I have ever seen. They didn’t even do anything for her because they thought she was going to die. They weren’t even going to feed her until we made them. She stopped breathing a few times in the hospital. On the fifth day they sent us home with Hospice. She was on hospice for a few months and she was doing so well that they transferred her over to home health. She was with home health for maybe a month before they did away with the pediatric part of home health. She has had LOTS of surgeries and there’s no telling how many more. She is now 10 years old and is fully dependent upon my husband and I. We love our daughter very much and enjoy taking care of her but she is getting very heavy and a wheelchair accessible van would help us tremendously! Thank you for taking the time to read our story!