Disorders of Sex Development (DSD)
Expert, Compassionate Care for Intersex Children
Children born with atypical sex organs need care from specialists who manage their physical, emotional, and social needs. As their parents, you need the support and guidance that only a team of experts can provide. Our pediatric endocrinologists, pediatric urologists, psychologists, and social workers understand your anxiety and are dedicated to helping you make decisions about your child’s care. Together, we help you face challenges that arise as your child develops and transitions to adulthood. Our holistic, individualized treatment supports you and your child every step of the way.
What Are Disorders of Sex Development?
Children born with disorders of sex development -- also known as differences of sex development -- may have sex organs that aren’t clearly male or female. This may be referred to as ambiguous genitalia. The most common disorders of sex development are:
- Chromosomal disorders, which result from an abnormal number of sex chromosomes
- Hormonal imbalances such as congenital adrenal hyperplasia -- an enlarged clitoris and fused labia caused by a genetic disorder that affects hormone production in the adrenal glands -- or androgen insensitivity, which refers to how the body responds to sex hormones
- Genital abnormalities such as abnormal growth of the penis, scrotum, or clitoris; impaired testicle development; or an absent or atypical vagina
Understanding Your Child’s DSD Treatment Options
We understand you have questions, and we are here to guide you. We help you make educated decisions about your child’s care when they are infants and as they grow to adolescents. We also work with adolescents who are recently diagnosed with differences of sex development after experiencing atypical sexual development. This is a lifelong journey for you and your child, and we are your partners.
- The first step is understanding your child’s condition and determining if it is affecting their physical well-being now or will in the future. For example, if your child cannot urinate properly or their condition increases their risk for testicular cancer as teens, surgery may be recommended. However, this is uncommon; typically, the decision to pursue surgery can be postponed until medically necessary. Your child’s overall health is our main concern.
- More often, your child’s physical health is not immediately affected, and you and your child will begin a long-term relationship with our gender care specialists. Your child’s team may include a pediatric urologist, pediatric endocrinologist, medical ethicist, social worker, and pediatric psychologist. Depending on your child’s age and needs, we also coordinate your child’s care with specialists in neonatology, genetics, pediatric surgery, adolescent medicine, gynecology, and fertility.
- As we get to know you and your child through multiple visits over time, we make sure you understand the impact your treatment decisions will have on your child’s future health and well-being. We explain the ethical, emotional, and psychological considerations of treatment. It’s a purposely slow and methodical process. We want you to be confident in your decision. We want to make sure your child feels comfortable with their body and gender identity when they become adolescents.
- Your child’s psychosocial and emotional well-being are critical parts of the process. Our psychologists and behavioral therapists are here for you and your family at every stage of your child’s growth.
- You may also work with our social workers and spiritual care providers, who offer children and families a full range of support, including assistance, education, and referrals to community resources. Our social workers can help you work with school staff if your child needs assistance at school. We also work closely with Duke Law School to offer assistance with legal matters such as changing birth certificates.
Evaluating the Need for Surgery for Disorders of Sex Development
In the appropriate setting, surgery to reconstruct ambiguous or atypical genital organs may be indicated. In addition to correcting physical concerns that may affect your child’s health, surgery may be necessary to allow your child to experience normal sexual function and fertility. Because each child is unique, we develop an individualized treatment plan for every family and every child.
Depending on the reason for surgery, genital surgery on boys may be performed between six and 18 months of age, when penile growth is minimal. Girls may undergo surgery during this time frame; however, vaginal surgeries that affect fertility can wait until after puberty.
Your doctor may also recommend non-surgical techniques, such as gentle vaginal stretching or dilation to correct an atypical vagina, for example.
We spend months discussing the impact of surgery on your child and help you understand when, how, and if surgery should be considered. No decisions are made in isolation; our team members have regular patient care conferences to discuss individualized treatment plans for each child.
If there is no physical concern, we often recommend waiting. Because surgery will have a significant impact on your child’s life, it requires a thorough understanding of all the physical and psychological considerations. You may choose to wait until your child is old enough to make their own decision.
However, if and when you choose surgery for your child, it’s comforting to know that we are recognized for the depth of our expertise. Our pediatric urology and endocrinology programs are nationally ranked by U.S. News & World Report. In addition, Duke Children’s is one of only seven hospitals in the U.S. verified as a level I children's surgery center by the American College of Surgeons. This Level I designation recognizes our commitment to providing the safest and highest-quality surgical care to our young patients.