Re: Re: Re: Re: Re: New to CAH
5/24/00 3:46 PM
Joe, concrats!!! like I tell everyone that finds this message board, God must REALLY be watching out for you because this is the best place to come for advice, support, prayers, and love. This board is my answered prayers. My daughter was born in '97 in Ohio. We did not have newborn screening. (I plan to do something to change that if it takes me 100 years!) That very question about SIDS hit me when I realized my daughter was misdiagnosed at birth and was hours from dealth. The hospital did EVERYTHING wrong. You will learn in females with CAH, their genitals are deformed (they call it ambiguious genitalia) meaning they can not tell the sex of your child. Most CAH girls are wrongly assigned a sex as a boy. Some have extremely malformed genitals and some have slightly malformed. The clitoris is enlarged "appearing" to be a stubby penis, with a fused vagina. When correct testing is done like ultrasound, hormone testing, and chromosome testing then they determine the sex, CORRECTLY. In our case EVERYTHING they did was wrong. They sent me home with a dehydrated "boy"!! Without my pediatrician she would have been dead, and probably blown off as SIDS. Good luck in your journey, you will have good daysand bad. We will be here for both. God bless.
Laura
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