Congenital Adrenal Hyperplasia
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Questions about controversial issues:
(We have attempted to present both side of the controversial elements to these questions. The left and right columns are the opposing views.)

Is cosmetic surgery needed on CAH girls?

Unless there is a medical necessity, no. 

There are several factors that make cosmetic genital surgery on children a very bad idea. First of all the many adult women who had such surgery done as a child or infant, strongly wish it hadn't. Second, medical technology is constantly improving, so surgery now most likely will rule out the chance for a more improved surgery later. In the end it is better to wait until the girl is old enough to be a part of the decision, that way she will have less regrets and will have more control over her own body.

As the parents of a virulized girl, my wife and I made the decision, wholly agreed upon by both her Pediatric Endocrinoligist and well as her Urologist, that since there is no present medical necessity for any cosmetic surgery, we would wait. The brunt of any problems regarding the look of her genitals (awkward questions from relative or child care workers) we gladly take upon ourselves in order to preserve her right to be in control of what is done to her body. We also reinforce her value and worth and gender identity. She is and always will be 100% girl, and we will make sure she always understands that the uninformed opinions of those who do not know better than to speak out in ignorance cannot change that.

-- Danny Carlton

For medical necessities and self-esteem issues, it can be.


There are several factors that make cosmetic genital surgery a good option.  More adult women are beginning to speak out saying that they have had the recent surgery techniques done by competent doctors.  They have stated that not only are they satisfied with their decision but also wished it had been done earlier if these techniques had been available. Medical technology has improved and may continue to do so but in those who have been pleased by their results now it shows there is no reason to wait.  It is better to have the surgery when a child is young enough to not remember it and make for an easier and quicker recovery period.  In their teen years, being part of a decision like this might be optimal but questionable in regards to motive and ability to think far enough into the future to what adult life will be like. Mentally and socially,  having the surgery early on, can alleviate unnecessary awkwardness and additional feelings of being "not normal"  when  medications and other precautions they deal with already can lead to low self-esteem. 


As parents of a virilized girl, my husband and I made the decision (also wholly agreed upon by her Urologist and Endocrinologist who presented both sides) to have the two surgeries done now.  There are treatments to prevent the total virilization from occurring in-vitro but they are not as thoroughly tested as some would like and future ramifications are still yet unknown.  This treatment would be optimal if CAH is known to be an outcome but since not everyone knows this first nor is it satisfactorily proven to be completely harmless to future brain and/or physical function it is not always an option for those concerned.


Because a body part of your child has been altered for cosmetic or medical reasons, a child will have questions and issues regarding the decision made for them.  Our child will have no doubt that they are valued and valuable.  Loved and lovable.  No matter a parents decision, all issues can be dealt with and overcome when they arise as long as the decision was made for the right reasons and a lot of introspection as well as research on possibilities and capable doctors is done. It is not a decision for everyone but it can be a good one.


-- RebeccaM

Will CAH make my child a homosexual?

Whether a person engages in heterosexual or homosexual behavior is a choice made by the individual. While there may be factors that influence that decision, just as there are factors that influence whether a person will be more susceptible to alcoholism, it still remains a choice by the individual. There are some factors in relation to CAH that influence gender identity, whether physical, emotional or societal, but each of these can be dealt with. 

Having an enlarged clitoris makes a woman no less a woman than having small breasts would, but unfortunately there are those that try to imply that such superficial characteristic defines a person. 

The effects of elevated testosterone in women has not been conclusively examined. Some effects, such as aggressiveness, heightened libido, and slight changes in mental focus have been observed enough to be conclusive, but there has never been any conclusive proof that such influences forces a woman to become a lesbian.

The crux of the problem is the societal ignorance that suggests any person outside of what's considered normal must be "wrong" or "broken". Young people in the confusion of puberty can be misled into thinking that any differences in their body, thinking or feelings are a sign that they are "messed up" and not normal, when they are as normal as any other teenager. The key is to reinforce your child's self image, specifically in relation to their gender. Assure them that they are fully male or female, and all that kids go through confusing times. 

-- Danny Carlton

-- to be added when submitted --