Disorders of Sex Development

Riley at IU Health is the only hospital in Indiana that provides treatment for children with DSD. Our expert team includes:

• Pediatric urologists who can perform reconstructive surgery
• Pediatric endocrinologists who provide medications that promote normal hormonal function
• Psychologists (or psychiatrists) who focus on children’s emotional health

DSD may be corrected with relatively straightforward treatment, or they may require the child and/or family to make challenging decisions. Riley at IU Health offers a supportive environment where families can make informed decisions based on their unique situations.

Treatment for Disorders of Sex Development

Riley at IU Health specialists have the expertise to care for a variety of DSD. Among the conditions we treat are:

• Mixed Gonadal Dysgenesis. This is a chromosomal abnormality that results in two different gonads (internal sex organs) being formed. These patients do not produce normal sex hormones. This leads to abnormal development of sex organs. It is often difficult to know which gender these children will identify with best, which can be challenging for many families. In these complicated cases, specialists at Riley at IU Health work with each child and family to focus on emotional and developmental needs. When urologists and other care team members address gender assignment surgery, we consider the desires of both the child and family. The goal of surgery is to match external physical characteristics to the child’s gender identity.
• Impaired Testicular Development. This condition occurs when the body does not produce testosterone normally and the testicles do not develop. The cause of this condition may be genetic or remain unknown. Each case is unique. Treatment may include surgery or hormone therapy to help normal development.
• Androgen Insensitivity Disorder. Children with androgen insensitivity disorder have a genetic disorder in which a child has XY chromosomes and testicles (often undescended testicles) linked to the male gender, but the cells in the body cannot respond to testosterone or other male hormones. If a child has incomplete or partial androgen insensitivity, the condition may be noticed early through genitalia that are abnormal or ambiguous at birth. A child with complete androgen insensitivity has external female characteristics, but has undescended testicles/gonads located in the pelvis or abdomen. These children are usually regarded as female. The condition may not be apparent until teenage years, when a diagnosis is made due to lack of menstruation. Children with this condition almost always identify as girls/women, but they do not have a uterus or ovaries and they cannot menstruate. This is a complex condition, and treatment depends upon the patient’s gender identity and unique needs.

Families can be assured that we will care for each child with sensitivity and respect.