THank you everyone for listening to me. I honestly think that what Janet said is right. My parents & sister don’t live in our home & don’t do the day to day thing...so CAH hits them in the face when it’s mention, here it’s right up there with did the girls get a bath>>>Not a big subject, just a normal subject.
I sat down with my mom & told her that while I understand her feeling that what she said was to protect our daughter, I don’t agree. My father has gone out & learned all he can about CAH & my mom needs to join him on that journey. My sister some how ended up on some websites that talked about gender idenity issues & I told her that she needs to look up CAH, not ambigouse genitalia in the search engine(HELLO!!!!)
When she was born, the genital issue was a big issue. I worried about what it meant & struggled to grasp everything that was coming at me. My husband & I have had 6 months to live with & process this & I guess the rest of the family just has to take longer. They love my girls, that I don’t doubt & I trust them with her medications I just think they are going to take more time.
By the way, the other thing that REALLY got to me was that my sister was a pediatric RN for 10yrs, before quiting to raise her kids...my Mom was an OB/GYN Nurse Practitioner until she retired! These are two very well medically educated women & they are still thinking in the "We have to protect this child" mode. They should know that this is not a shameful thing.
On to the Newborn screening issue. I too am a Pediatric RN & I brought those postcards expanding CA newborn screening to work...while everyone was more than willing to sign them, I spent more time educating them then I thought I would have too. I understand the nurses & aids not knowing, but a few of the Pediatricians kinda scared me with their lack of knowledge...I talked to the head of the department & told him I would like to getthe MD’s more education on this subject. Hopefully it will happed.
Jessica