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Congratulations on the birth of your daughter. Our CAH daughter is now 4 years old and going famously. She is seen regularly by a paediatrician and also less frequently an endocrinologist in Brisbane (Michael Thomsett). We live on the Gold Coast and so have fairly easy access to medical professionals. We tend also to give a fairly basic description of her condition as it is far too complicated to go into too much detail, although we do stress to anyone looking after her the seriousness of the condition and the things to look out for in the case of illness or adrenal crisis. We have a certain sister-in-law who just doesn't understand the seriousness of the condition because Grace looks and acts 'normal', she thinks that because you can't see anything wrong with her that there is nothing wrong with her. Understandably, we never leave Grace in her care!! We also have the Dr Warne book which is excellent to give to the relatives. Grace has had about 8 trips to hospital (just recently on the weekend), all times except one with bouts of vomitting/diarrhoea which has required fluids and hydrocortisone through an IV. It usually involves an overnight stay and home the next day firing on all cylinders. She just seems to need a boost to get over this type of thing. Apart from that everything else has been fine, no problems with immunisations, she is very active, very intelligent, and has started kindy this year. I wouldn't wish CAH on anyone, but if our child was to have a serious medical condition, I am relieved that it is CAH which is manageable and treatable and not something more serious which would affect her mobility or brain.
Your little girl should lead a happy normal life if her condition is treated and managed well.
