Hi Kate
Sorry to hear you have had such a rough time due to medical inefficiency! I am always saddened to hear of babies still being born and released from hospital without a thorough medical check-up taking place. It is true that some baby boys have undescended testicles but if not found, then alarm bells should ring and in your little girls case, CAH should have been suspected and a chromosome test should have been performed!
I personally do not agree with doctors who say you can raise a baby girl with CAH as either sex. Girls with CAH, may have an enlarged clitoris but they are NOT boys and to make them so this would mean removing their internal female organs and giving testosterone injections for life, on top of their meds for CAH. This surgery is in effect performing a sex change operation on an unconsenting child - how can this be right? I am pleased to hear that despite the difficulties (explaining to friends and family can't have been easy) you chose to bring your daughter up according to her true sex. You definately made the right decision as she now has the chance to lead a full and 'normal' life!
I can understand your upset with the doctor who made such careless and assuming comments. The decision regarding surgery is a difficult one but you should be receiving help and advice. There is no right or wrong, but you should be given all the facts (pros and cons) and have access to counselling so you can talk things through and in time make an informed decision for your little girl, which you are happy with. I think you appear to be 'slipping through the net' and are not receiving the full care and attention that you deserve. Are you in the UK? If you contact me, I may be able to help!
Sue@cah.org.uk
