Debbi, We have been through the same thing that your family has been through. Our son's don't have the outward sign to alert the docs that there is a problem. I never really thought about it that way, I just knew that some of the boys with CAH are being lost to it because of that and no heel sticking. I remember my son lay naked strapped to arm boards, respirators, IV's coming out of his belly button, head, arms, tape covering his sweet lips and tubes up his nose and penis. I remember several people, including docs, nurses and even family members mentioning the size of his enlarged penis. I believe there were even a few "high fives" between men as they grinned with pride. I do not blame them for this. I just wish the doctors were alerted that, given all the other things wrong with him, it could be a sign of CAH. My son was strapped down for so long and was so volital that the nurses were actually afraid to move him to change his diaper so they kept him without a diaper hoping they could stablize him soon. He dropped a couple of pounds and then became so bloated that he developed a bedsore which necrophied. It was right smack in the back of his head. He will NEVER be able to grow hair there. I am lucky to have a creative hairdresser. They feared that the bedsore was in a bad spot (brain/blood) barrier. Luckily, at that time, I didn't know that that meant that he could die from the infection. I don't think I could have taken one more thing. During his first 28 days of life, he underwent 3 spinal taps, 3 transfusions, and 2 EEGs while they tried to figure out why he was so sick from infection. He was racked with infection due to the fact that he contracted Group B strep at birth, but since there were no "outward signs" of CAH, they didn't pick up any of that until after they had called for the priest to hold him as they removed him from the respirator. It was then that he decided to fight. I couldn't hold him at all for the first 3 weeks. We could only touch the toes of his right foot. (which we found out later were very tickelish - sorry Ryan). I pumped my breast milk and froze it as often as I could, because when that is all you can do for your little baby, it is what you do best. I would wake up at 3:00 am and sit on the edge of my bed. I would strap on the breast pump and begin pumping and aching for my baby like crazy. I would trade for those 3:00 am feedings that everyone complains about anytime. Then, so I could feel closer to my son, I would call the NICU and ask if he was going to make it through the night. They would give me his numbers and vitals and say that they would see me in the morning. One time he became so dehydrated that they had to drill right in to his bones to rehydrate him cause his veins were flat. I can't say that I know what the answer is for all of the tension on this board lately, but I do know that we must find a better way to help our children without fighting amoungst ourselves. I miss the free flowing chit chat which I choose to think of as support and healing. Let me know what you choose to do Danny, and then we can all make our own choices from there. I have learned more talking to the people on this board over the last few months than I have talking to my doctors over the last 5 years. I would definately miss all that.