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There are many ways you can help children and their families get the care they need.
At Boston Children's Hospital, we understand that a diagnosis of congenital adrenal hyperplasia (CAH) can be troubling. You are probably wondering where to go from here and how to make sure your child receives the care she needs and deserves.
In general, the prognosis for people with CAH is dependent on medical management, surgical management, and psychosocial support. The techniques used in the treatment of CAH have improved significantly over the past 20 or 30 years. Now, more successful reconstructive surgeries are performed, resulting in female genitalia that's both functional and normal in appearance.
The treatment options for CAH may include:
Hormone replacement therapy (HRT)
Will my child need surgery?
Boys with CAH don't require surgery. For a girl, it depends on how much virilization (masculinization) occurred in utero. In other words, the decision on whether or not to operate depends on how masculine her genitalia looks.
In mild cases, where there may just be a little enlargement of the clitoris or a little fusion of the labia, the doctor may decide that little or no surgery is necessary. In other cases, the girl might have been exposed to a lot of testosterone in utero, and it may look like she has penis and a urethra. In these cases, we may recommend more involved reconstructive surgery so she has separate openings for her vagina and urethra.
CAH can be emotionally hard for parents and children alike. Fortunately, there is a lot of support and help available to you.
Children's resources for families:
Visit the Behavioral Medicine and Coping Program page or call us at 617-355-6688 to learn more.
Adolescence can be stressful—even for physically healthy teens. Having a condition like CAH during adolescence further complicates life for teenagers.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”