Intersex

Alternative Names

Treatment

Ideally, a team of healthcare professionals with expertise in intersex should work together to understand and treat the child with intersex - and to understand, counsel, and support the entire family.

Parents should understand controversies and changes in treating intersex in recent years. In the past, the prevailing opinion was that it was generally best to assign a gender as quickly as possible, often based on the external genitals rather than the chromosomal gender, and to instruct the parents to have no ambiguity in their minds as to the gender of the child. Prompt surgery was often recommended.  Ovarian or testicular tissue from the other gender would be removed. In general, it was considered easier to reconstruct female genitalia than functioning male genitalia, so if the 'correct' choice was not clear, the child was often assigned to be a girl.

More recently, the opinion of many experts has shifted. Greater respect for the complexities of female sexual functioning has led them to conclude that suboptimal female genitalia may not be inherently better than suboptimal male genitalia, even if the reconstruction is 'easier'. In addition, other factors may be more important in gender satisfaction than functioning external genitals. Chromosomal, neural, hormonal, psychological, and behavioral factors can all  influence gender identity.

Many experts now urge delaying definitive surgery for as long as healthy, and ideally involving the child in the gender decision.

Clearly, intersex is a complex issue, and its treatment has short and long-term consequences. The best answer will depend on many factors, including the specific cause of the intersex. It is best to take the time to understand the issues before rushing into a decision. An intersex support group may help acquaint families with the latest research, and may provide a community of other families, children, and adult individuals who have faced the same issues.

Support Groups

Support groups are very important for families dealing with intersex.

Different support groups may differ in their thoughts regarding this very sensitive topic. Look for one that supports your thoughts and feelings on the topic.

The following organizations provide further information:

• American Association for Klinefelter Syndrome Information and Support -- www.aaksis.org
• CARES Foundation -- www.caresfoundation.org
• Congenital Adrenal Hyperplasia Education and Support Network -- www.congenitaladrenalhyperplasia.org
• Hypospadias and Epispadias Association -- www.heainfo.org
• Intersex Society of North America -- www.isna.org
• Turner Syndrome Society of the US -- www.turner-syndrome-us.org

Outlook (Prognosis)

Please see information on the individual conditions. The prognosis depends on the specific cause of intersex. With understanding, support, and appropriate treatment, overall outlook is excellent.

When to Contact a Medical Professional

If you notice that your child has unusual  genitalia or sexual development, discuss this with your health care provider.