My precious daughter

Carla - East Orleans, Massachusetts
Entered on April 29, 2009
Age Group: 30 - 50

I believe that every moment counts and every life is precious.

My daughter was born with Aplasia Cutis Congenita on the scalp. Usually Aplasia Cutis involves only the epidermis (upper layer of skin), and usually heals over time, but in my daughter’s case it was a deeper lesion involving the epidermis, the dermis and also the skull. In other words, she was born with no skin and no bone on top of her head.

When my daughter was born I felt completely alone, and so unlucky. I began to ask myself why this had to happen with me? At that time the doctors couldn’t do anything to make me feel comfortable, because they were stunned just like I was.

She spent about three months at the hospital. I used to get there at 7am and leave around 10pm. I was trying my best to pretend that my baby was

normal. At that point I had to make a decision to leave behind everything else I had to deal with, and just be there for my precious daughter. She was so tiny, but with a strong voice. When she used to cry, she could be heard on the whole pediatric floor. It was her tiny strong voice that made me believe she was there, and she was fighting for life. After three months waiting for any good news from

the doctors, I felt that my daughter had nothing else to do over there. We went home that day.

When she was about ten months old her father got a phone call from his

cousin that used to live in the United States of America. She said that she found a hospital in Massachusetts that maybe could help us. Then my daughter and I came to U.S.A. in November 1998. We finally found help at the Children’s Hospital in Boston. She did three surgeries at this hospital, and everything went well. After the last one the doctor told us that his job was done, and he did everything he could to make us more comfortable, and also to give to my daughter a normal life.

Today I have an eleven year old daughter. I feel lucky now, because I could help her, and I was strong enough to help her. I feel lucky because she is alive. Everything she does is so important to me, even any little paper she draws at school. I kept every all her baby clothes and toys she had. How could I throw away those little things? They were there helping me to go through all this. I want to show her these little things some day soon. It is kind of hard to explain, but even when she is mad at me or when she says she doesn’t like anything I do, I feel lucky to have her alive next to me.

I believe that every single moment is precious. I believe we never have to give up on anything, and we always have to be strong and find a way out of ours problems. I believe that my daughter’s voice made me believe that she was going to be here today with me, and that she wasn’t giving up.