There is much confusion in the general public about children with ambiguous genitalia (sometimes referred to as “intersex”).  At the University of Chicago Adoption Center we often consult with parents pre-adoption and provide medical care post adoption for children with this diagnosis.  The following are items every parent should know before deciding to adopt a child with ambiguous genitalia:

1. What is it?  Ambiguous genitalia is a rare condition where a child’s external genitals don’t appear to be clearly either male or female.  The child might have male and female characteristics.  Ambiguous genitalia is not a disease, but it is a sign of a disorder of sexual development.
2. What causes it? First, it’s important to know that a baby’s sex is determined at conception. Male and female genitalia are formed by the same tissue. Ambiguous genitalia occurs when there are problems during pregnancy that cause differences in how the genitals are formed.  For example, if there is a lack of male hormones in a genetically male child, or if a genetically female child is exposed to male hormones during pregnancy then the child may be born with ambiguous genitalia.
3. How will I know if my child is really a boy or a girl? Lab testing will be done to measure the child’s hormone levels, and to determine the genetic sex of the child.  Some referrals will have had this testing prior to adoption, but we will repeat these tests once the child is in the adoptive home. An ultrasound of the pelvis and abdomen needs to be obtained to check for undescended testes, a uterus, or a vagina. Because professionals are still learning about how gender identity is formed, it is advised that parents considering adoption of a child with ambiguous genitalia be comfortable with the potential of a long period of “watching and waiting” as the child nears puberty, cultivating an environment of acceptance and openness in all topics related to gender identity.
4. What needs to happen to manage my child’s condition? Several specialists may be involved in creating a treatment plan for your child, including an endocrinologist, geneticist, urologist, and often a psychologist or social worker. Hormone treatments to correct imbalances may be indicated at various stages of development, such as during puberty. Sometimes surgical procedures are performed to assist with urinary functioning, for cosmetic purposes or to improve sexual functioning.
5. Can a child with ambiguous genitalia lead a normal and fulfilling life? The short answer is—yes.  Medical specialists and psychologists have come a long way in understanding the causes and treatments helpful to children with ambiguous genitalia.

References:

View Children Currently Waiting for Adoption with this Special Need

Mayo Clinic : Ambiguous Genitalia

Medline Plus : Ambiguous Genitalia