Reading the post from JoJo's mom and others about doctor's malpractice concering the treatment of their CAH children was painful.  My heart goes out to all children who may have suffered unneedlessly due to the misperceived, misdirected  and ignorant notions of physicians who fail to keep the well being of the child in mind. 

Unfortunately, using the baseless threat of  CAH endangering a parent and child bond is not unique to JoJo's mom.  It is one of the main reasons that physicians are so quick to rush little girls born with CAH to surgery to remove enlarged clitorises.  The current protocol used by many physician states that this unnecessary surgery must be performed as soon as possible otherwise the parent will be unable to bond with the child because of her ambiguous genitalia.  I know the mother of one child who was told if it wasn't removed, it would become cancerous. 

As you know, that is patently untrue.  The doctors that treat CAH children must be forced to realize that a child is loved no matter what.  That love won't abate if the child must take medication, requires extra care, or has ambiguous genitalia. 

One thing that amazes me as I learn more about my own treatment as a CAH child, or the treatment of children with CAH today, is the lack of resources given to new parents.  When a child is born with diabetes, the parents must take classes and go through counseling before that child is allowed to go home.  Why does that not happen with CAH children?  The parents of children with life-threatening diseases are often steered to support groups, but parents of CAH children are often kept isolated. 

I read how many of you talk about being in some study or another with Dr. New.  Does she ever make an effort to bring you all together?  Or does her arrogance and silence keep you apart?

You, the parents of young children are in a unique position to change the current protocol of treatment.  Just as you convinced the makes of the cortef solution that it wasn't working, you can change the way children are treated in the first part of their lives.  JoJo's Mom, LynnT, I wish you the best of luck in your legal recourse against those that did your child injustice.  The acknowledgement that you love your child no matter needs to be impressed upon the medical community.

As an adult with CAH, I hope you can extend that reach into stopping the unnecessary surgeries that are performed on little girls born with CAH.  Myself, and many other women with CAH can attest that the misguided intentions of the currently accepted medical protocol are wrong.  And my mom can attest to the fact that she would have loved me no matter what my genitals looked like.

Best,

Betsy