Gayle's Story

[Received Oct 2002]

Hi,
I am the mother of an eight year old daughter who has P.A.I.S. First of all I would like to say that I find the ALIAS to be full of information. We are keeping each copy for our daughter so that she will have plenty of information about her condition. We find it very valuable and we have found out so much more about A.I.S. from your articles than we ever did from any Doctor.

My daughter was born by C-Section. The gynecologist told us that we had a beautiful baby girl. Then she was taken by the pediatrician and was checked out. At that time I knew that something was wrong. It seemed to go quiet and people were gathering around her. I had been worried during my pregnancy because I had to take medication for my asthma, and one of the side effects of one of the medications, was that babies could be born with a cleft palate. So I thought that our baby had a cleft palate.

The pediatrician then came over and told us that he wasn't sure if we had a boy or girl and that arrangements needed to be made to transfer the baby about seventy miles away to a hospital in Philadelphia. Apparently she needed to have a lot of tests done. To say that we were stunned is an understatement. The pediatrician tried to explain about ambiguous genitalia. He also said that she would probably be brought up female since it is harder, "to make a pole than a hole." I find it incredible that I didn't say anything to him about his insensitive comment. I can only think that we were both still in shock.

I nursed my baby before she was taken from me, to go by ambulance to Philadelphia. My husband went to Philadelphia with her, while I was left in the local hospital for three days recovering from a C-Section wondering if I had a little boy or girl. After about three days of various tests, including a chromosome test which came back as male(XY) we were informed that it would be better to raise our baby as a female. So at that point we informed people that we had a baby girl.

At three months old our baby was back in the hospital having her testes removed because according to the doctors they could become cancerous. Also she needed to have surgery done on her genitals. All through this we were still in shock. We didn't know of anyone else who had gone through this. Our pediatrician had only seen one other case of ambiguous genitalia and that was years ago.

So we felt alone and isolated dealing with it all. We have told only a few people about her genetic make-up. Our biggest fear was that people would look at her and treat her differently. Would they look at her as a boy pretending to be a girl? Some people can be so cruel and as a mother I want to protect my daughter. I am not sure that what I am doing is right, all I know is that I love my daughter with all my heart and I am trying to do what is best for her.

After her surgery at three months old we have had very little contact with the doctors involved. About every two years she is checked out by the endocrinologist to see that she is developing properly. When my daughter was a few months old I went back to the hospital where she was born and I talked to the nurses. I gave them my phone number and told them that if anyone else gave birth to a child with ambiguous genitalia then they could call me. Parents need to talk to other people who have gone through this. When we had our daughter we were really isolated and we only had the so called experts to talk to.

My husband and I first got in touch with your group after reading some magazine article. My husband talked to Sherri [founder of AISSG US] one night on the phone. I still get quite emotional when talking about my daughter so my husband usually does the talking. Anyway Sherri was wonderful and sent us information about the group etc. So we went to a meeting in Chicago were we met some wonderful people and gained a lot of information.

So far our daughter doesn't know much about A.I.S. We have told her that she was born without a uterus, and a vagina so she will be unable to have a baby growing in her tummy. We have explained that there are plenty of babies who would love to be adopted and have her as a mommy.

Most days I don't think about her having A.I.S. Is this denial? I don't know. All I want for her right now is a happy childhood. Yes, I think that she is happy. She is a very sensitive, kind hearted little girl. True she prefers to play with her soft toys and horses rather than Barbies or dolls but so did I as a child. I know she prefers jeans to dresses but so do I. She is horse crazy and loves to ride. She is my wonderful daughter. Yes, I worry about her future but I worry about all of my childrens' future. I want them all to be happy and successful in all they do.

Many thanks again to all of you who work on ALIAS. You all do a great job and help so many of us.

Gayle