Thank you both so much for your replys.  I love to hear stories of people living normal lives with this.  My daughter has an appointment on May 4 with the urologist to see if she will need any surgury.

Hanni-  did you know of any family members who had this before you had your daughter?  I find it so strange that this is rare but yet from what I’ve gathered it’s pretty common to be a carrier.  Do you have any other children?  Are they affected?

Liz- once you got a little older was the medicine just second nature?  As a young adult did you ever stop taking your meds just because (you know how at a certain age you start to think you know it all, but really don’t know anything :)  )?  One of my big fears is that my daughter will decide to rebel someday and just stop taking her meds.  She is a stubborn little thing already.  She will purse her little lips together and refuse to take her sodium.  We have spent up to 1 1/2 hours trying to get her to take meds before.

My other question to both of you is have you thought or would you have any more children now that you have a child affected by this?  We have a 3 year old daughter who is not affected (unless she shows signs of late onset later).  We always wanted 3 kids and after having our second daughter (before day 10 of her life) we right away discussed that we would someday try for a boy and have a third child.  Now I just don’t know.  If this disease is a hard thing to live with, I don’t want to have another child who may have a hard life.  I know my daughter is only 2 months and it’s silly to even start worrying or thinking about having another, but that’s one of the things that I question and think about.  Also, do you find that doctors don’t always have a clear answer to everything?  I have asked our endo a few questions where I have gotten "I don’t know" type of answers.  He tells me that the disease hasn’t been identified and treated long enough yet to know side effects of certain meds or to know exactly how her future will look.

Thanks again for replying.  I have been wanting to talk to others who are living with SWCAH since we found out about our daughter.  It makes me feel really good to hear about you Liz, that you have a child and a marriage and a "normal" life.  And, Hanni you seem to talk so comfortably about your daughter and she’s not that old.  It gives me hope that things will just get easier and less awkward.  God knows my little girl is such a gift and I want to be the best mom and can for her and try to give her a "normal" life, but I think I need support like this website to help me do it.  I love her so much!!!!!!!!  I just want to keep her safe and healthy!!!!!!!!!