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We didn't know my daughter had CAH before she was born but when she was born, in a small town hospital, the pediatrician highly suspected CAH and sent us to Children's Hospital. We drove the day after she was born and it took us 10 hours to drive a 6 hour drive with a newborn and stopping to nurse and all. We ended up staying 3 nights in Children's. In that time they ran a bunch of tests and when the genetic test came back positive they started my daughter on Cortef and Florinef. They had us return to the endocrinologist quite often the first few months to make sure that her hormone levels came down and were under good control. Now she is almost 8 years old and we go to the endo every 3-4 months. It was a whirlwind at first but you have got a head start on digest all the information out there. The most important thing is to be prepared for illness or injury by carrying an emergency kit. In it you should have: infant advil, thermometer, Cortef, and solu-Cortef (the injectable. We put ours in a hard eyeglass case to protect it in a purse/bag). Make sure the nurses teach you how to give the shot and WHEN to give the shot and warning signs of when to give extra oral meds. Once you feel prepared for any emergency then you can relax and enjoy your baby girl. They are so precious and only young for such a short time. Whether or not to have surgery can definitely be another whole area of worry. Please get lots of facts on this subject and if you decide to have surgery then contact CARESfoundation.org for information on top quality urologists who have the latest techniques and have performed this surgery many times. It's worth the travel, if necessary. Know that our children with CAH are amazing people. They can live active healthy lives. My daughter skiis, mountain bikes, swims, climbs trees, hikes, and does karate. We don't shelter her. We just make sure she replenishes fluids, electrolytes and salts and sugar when she is super active or else she bonks quickly with a headache and overall poor feeling. Good luck, I must go wash my daughter's hair! Good luck! Julia
