My wife and I were not very happy with the article to say the least.  It was very sensationalized and missed the point completely.  I just finished sending them a letter which i’ve pasted below.  Hopefully some of you will share your opinion with them as well. 

 

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By luckydaddy on Tuesday, August 19, 2003 at 8:15pm   (#215 of 215) Send a personal message to luckydaddy.

CAH article I just had to respond to the article written about Kaye and Christianna Colello. I am the father of a little girl with CAH, also a salt-waster. I was, as was my wife, truly disappointed in the overall subject and tone of the article. I am also disappointed in some of the physicians attitudes and care described in the article. I am most disappointed and frustrated by the lack of inclusion of some of the most important aspects of the disorder. The article really seemed to gloss over the truly important issues and focus on the most unimportant aspect of the disorder- Genitals. Genitals DO NOT control a child’s gender identity. Genetics, the brain and outside stimuli control a child’s gender identity. Genitals only control other peoples perception of gender identity. The real issue with CAH is the Medical care to control adrenal suppression and Glucocorticoid and mineralocorticoid replacement. These medications must be administered accurately and at very closely followed times. Some kids who are salt wasters must also take salt supplements since breast milk and formula have very low sodium content. This is what keeps these kids alive and functioning normal every day. Lets not forget the emergency doses of Glucocorticoid in times of physical stress. Parents must be prepared to administer, by injection, triple doses of Hydro cortisone ( the most common glucocorticoid). These injections replace the elevated chemical that our bodies make in times of physical stress or injury that their’s don’t. Other complications can include frequent urinary tract infections in girls, abnormal and premature bone aging, short overall stature from projected height and side effects from improper steroid dosing. The physicians handling Christianna’s care, as presented in the article, sounded very uneducated in regards to CAH. This is one of the MOST frustrating and deadly consequences of the disorder. Some doctors, just like a large number of people, are preoccupied with the symptom (ambiguous genitalia), and discount the problem (CAH). Thank God that little girls have this marker! At least there something to alert people to the problem. For Boys, there is no such marker. Yes, BOYS also have CAH! That this was not mentioned in the article blew me away. These children have no physical indication of their disorder. That means that they are usually admitted in-crisis without having been diagnosed. Girls have the advantage of, with educated care-givers, several days of testing for diagnosis and precursory treatment before they deplete the hormones provided in-utero. While I was pleased to see the side bar on testing, the state run testing program’s results usually follow diagnosis due to processing time. The most important effective tool for diagnosis is physician education. My point is this. When our daughter was born, yes we were devastated. Not because of her genital appearance, but that she had a serious condition. She was always a she even if the odd doctor wasn’t sure on first inspection. We were lucky that even in our small town, to have someone very educated and caring in charge of our daughters care. We have continued to be lucky in that her endocrine care and future surgical care has been and will be handled by similarly minded physicians. Sensationalizing this aspect of the condition has done nothing to help educate people about the true nature of the disease. It has only turned our children into subjects of curiosity for ignorant people to ask questions about. Unfortunately, instead of "how is your child doing" it’s "is your child really a boy" or "did you have his penis removed" (actual parents quotes from the CAH message board). Hopefully this was not the intent of this article.

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