Julie's Story: Parent's Letter ProjectUnknown syndrome- Julie’s mom
My daughter was born November 30, 2004 with an unknown syndrome. She was born with colonic atresia, iris coloboma, craniofacial issue, and a few of other things. She had several surgeries before she was 6 months old.
Honestly, before my daughter was born, I didn't know much about syndromes except for the one that is talked about the most... Down Syndrome. There are many syndromes and my daughter was tested for all that her anomalies seemed to match. All of the results came back negative. This is great in one respect, but as parents, my husband and I just wanted an answer. As a mother, I felt I did everything right to ensure she was healthy; so it was very important to me to know what beat me at my game plan.
My daughter is now six years old and although it took a while I realize I didn't do anything wrong. It was something that just happened. The doctors at Children's National are great and we still visit Kenneth Rosenbaum, MD, a geneticist who follows my daughter. My daughter has grown and is a happy little girl.
My advice to you is to ask a lot of questions and remember no question is a dumb question. You are your child's advocate.