Hi Toni,

I think maybe you misunderstood what I was saying.  If not, I do apologize for reposting.  It’s just that there aren’t any longterm follow-up studies done yet (I’m sure they will be coming in the future) about the longterm effects of the prenatal dex treatment.  There haven’t been any on longterm effects of surgery either.  Without those, the treatment protocol remains truly experimental.  It’s the lack of long term followup on many aspects of CAH that disturbs me. 

The trend has been rapid and frequent changes in the realm of CAH treatment over the course of many years and it then makes follow-up practically useless/impossible because it eliminates the controls.  If they were to study whatever procedure was in vogue now, when the girl reaches sexual maturity, it wouldn’t pass peer review because the naysayers would say it is no longer done that way and thus render the study useless.  It has happened with surgery for over 50 years in that manner and I see the same scenario setting up with prenatal dex treatment. 

There are numerous medical professionals who feel the same way as I wrote of, most notably Bill Reiner at the NIH.  I did a panel with him early in this year and his statements during that and a subsequent discussion are what prompted me to learn more about the dex.  It’s not a good drug to be putting into any body, whether that body belongs to yourself or your child.  I can post a link to the synopsis of the presentation if you would like; just let me know.  You can also find it at Bodies under recent events.

When the children treated in this manner are reaching sexual maturity and becoming sexually active, will it prove itself as right or wrong?  We don’t know because the protocol will likely have changed by then.  It’s like, the condition can be so shocking everyone wants to rush off to the best and next new thing to try and fix it.

I understand you want only the best for your child.  My partner has two children and I see that everyday with her.  It’s a tough decision for any parent and mother to make.  To be honest with you, if it was me, I’m not entirely sure what I would do. 

Actually, I do know:  I would end of thinking about it so long, it would be too late by the time I made a decision.  I would think so long because I would have to consider my own upbringing and experiences vs the effects of dex.  I don’t have an easy solution or answer to that conundrum.

I know for myself, as a woman with CAH, it’s a crazy loop when I start thinking about it and a classic example of what came first, the chicken or the egg? 

In the great majority of cases it’s a cosmetic issue, and not a functional, quality of life issue.  If there were drugs to prevent blindness or juvenile diabetes, I wouldn’t hesitate.  But a big clitoris... it’s only a cosmetic issue in most cases and it doesn’t always work, yet the effects of dex can be harmful to both mother and child.

It also can lead us down other dangerous roads, such as abortions that otherwise wouldn’t take place if CAH wasn’t part of the picture.  As pro-choice as I am, that prospect bothers me beyond comprehension...but I digress and that is a whole separate topic on it’s own. 

Maybe it sounds cold to hear me say this, but if you are pregnant, and want to have a baby, have the baby and get newborn testing (even if your state doesn’t offer it, you can still get it) and deal with the results.  In girls, it obviously wouldn’t matter because it is what it is...a cosmetic issue.  As long as you don’t buy into the shame and secrecy fallacy, it will be ok; trust me on that;  I’ve been there.  

Well, maybe not...as mine was taken from me so I have nothing to compare it too, but ask any CAH woman who was lucky enough to make her own choice whether or not to retain control of hers and then ask those who had theirs taken away.  A big clitoris is not the end of the world as you know it, nor is any of the myriad of other conditions that cause genital anomolies, obvious at birth or not. 

With your good parentage and openness, your little girl will be okay with her big clitoris. You need to be comfortable with it too, though.  It’s a big job to raise a little girl who is different.  Read the boards at Bodies if you want some proof of that, and proof of  the damage that can occur if your baby doesn’t get the support she needs from her mommy and daddy about the most intimate of matters.

Feel free to post there too and ask an audience of those born with bodies that are a bit different how they feel about it if you don’t believe my plea to not damage your daughter or yourself over a cosmetic issue with an unproven protocol of treatment.   There’s some there that will likely disagree with me;  those that would agree will likely do it in a very heartfelt manner.  In fact, I would encourage all parents of CAH girls to spend some time reading posts there, whether or not you are considering surgery, dex or some other new fad in treatment or have already consented to such.

The best and next new thing doesn’t always work, and just like with surgery, dex treatment may take decades for it to be proven or disproven. 

There are control issues to keep in mind also; you don’t know what your baby will want when she grows up or her opinion on the matter when you make that choice for her.  She may not take her meds as prescribed and choose to virilize further when she can make her own choices and learns more about CAH.  It happens. 

Danny, if it ever rains and I get a good, solid day to spend doing some research (of which I have a whole lot of items on my own personal ’honey-do’ list to tackle also) I will post some links.  If I could only remember to bookmark them, my life would be easier. In the meantime, I know there are others here who probably have some early ones handy and maybe they can post them.  Unfortunately, there aren’t any of when the child reaches maturity yet because the treatment hasn’t been around long enough, and that is my concern.

Best always,

Betsy Driver

http://www.bodieslikeours.org/forums/