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Hi, I am a new Mum and my daughter was diagnosed with CAH when she was a day old. She is now nearly 8 weeks old. This is our first child, and my husband and I are often daunted by what we are faced with. We live in a small town where, although the doctors have been absolutely fantastic, they still know little about her condition. The Pediatrician is happy with her growth and she is feeding well and doing all the 'normal' things a new baby should be doing. We have blood tests and blood pressure checked once a week, and she is given medication 3 times a day. We plan to see an Endocronologist in April in Brisbane.
From the outside it is often hard for us to believe there is anything wrong, apart from her slightly enlarged genitalia, she is a happy healthy child. We are finding it difficult to explain to people what is wrong with her, apart from that her adrenal gland isn't working properly - what do you tell people?
I would appreciate any feedback on what others have experienced with a newborn, what to look out for and how they coped.
I look forward to hearing about other parents experiences.
