) When your child was born did you receive any kind of support through the hospital or a social worker?

No, we received no support when my SW-CAH daughter was diagnosed at 2 weeks of age.  We were just told my daughter has CAH, here is a prescription for her meds see you in 3 months.

2)Did anyone Tell you of any kind of support groups web sites?

The Endo told us of no support groups or web sites relating to CAH.

3)What information would you like to have been told at the time of your childs birth? What did the doctors not tell you?

I would have liked to know how serious CAH is and that she could die from it if she didn’t get proper care.  We were never told about the solu-Cortef injection or about stress dosing if she was sick.  She never even stayed it the hospital when she was first diagnosed, they just sent us home with the meds and that was that.  It is so scary to think about what could have happened if she would have develped a fever or started vomiting, I would never have know to treat it seriously.

 

4)Would it have helped if there had been someone there who had first hand information such as a parent of person with CAH shortly after your childs birth?

It would have been great to talk to a parent who had a child with CAH, it would have been extremely helpful.

 

Thanks for the survey, I will be interested in the results

Sally