Differences in Sex Development Program
Differences in Sex Development Program
Seattle Children’s and the University of Washington formed a multidisciplinary team in 1981 to care for children with differences in sex development (DSDs). This team has become Seattle Children’s DSD Program and is named a Center of Excellence by the National Institutes of Health.
We diagnose and care for babies, children and adolescents with all types of DSDs. These include conditions that affect genital development and intersex conditions. The causes may be changes in genes or chromosomes or problems with hormones or with the testicles or ovaries.
Why choose Seattle Children’s DSD Program?
At Seattle Children’s your child will receive care from experienced experts in many medical specialties. Our team:
- Provides compassionate, evidence-based care
- Does research to assess outcomes and improve care for all kids with DSDs
- Educates families and healthcare providers about DSDs
Many children with DSDs have complex, rare conditions. They need care from specialists in many different fields. Our team includes experts from:
- Pediatric and reproductive endocrinology
- Child and adolescent psychiatry
Our DSD team meets regularly to discuss each patient’s care so your child and family benefit from the expertise of the entire team. Our team members work together closely – and with your family – so your child gets expert care at the right time.
To diagnose your child’s condition, your team at Seattle Children’s starts with a physical exam.
If needed, your child may also get:
- Tests to look for changes in chromosomes, genes or DNA (cytogenetic tests)
- Blood tests to measure hormone levels
- X-rays or other imaging studies
- An exam using a small camera that goes inside your child’s body to see their organs (endoscopic and laparoscopic studies)
- An evaluation to tell how your child’s condition is affecting their life (psychosocial assessment)
Children with urgent conditions may stay in the hospital for diagnosis. Others may come to the DSD outpatient clinic.
Seattle Children’s offers a range of options to manage DSDs, plus support to help your family make decisions about your child’s care.
DSDs are lifelong conditions. In recommending treatment, we focus on:
- What is best for your child’s physical and emotional health
- Preserving the possibility for your child to have biological children, if possible
- Promoting their ability to have satisfying sexual relationships
- Honestly informing patients and families about the benefits and risks of treatment and the limits of our knowledge about long-term outcomes
The right treatment for your child depends on their condition. Options may include:
- Hormonal therapy.
- Nonsurgical treatment (such as vaginal dilatation to enlarge the vagina).
- Surgery to improve function of the urinary tract or genitals (surgical reconstruction). Some children need urgent care after birth to treat a condition that threatens their life or health. Other treatments can be safely delayed so a child has time to express their gender identity and be actively involved in choosing treatment options.
- Psychosocial support.
- Long-term follow-up as your child grows and develops.
- We take time to explain your child’s condition, provide resources and answer all your questions. We help you fully understand your treatment options and make choices that are right for your child and your family.
- Our experienced counselors support you as you decide whether it is best to raise your child as a girl or a boy.
- As your child gets older, we include them in decisions about their medical care. Our team can help your family think through how to handle challenges at different phases of your child’s life.
- We know how important it is to talk to other parents of children with DSDs. We can help you connect with other parents.
- Seattle Children’s hosts a support group called the Alliance for DSD Family and Peer Support.
Conditions We Treat
We care for babies, children and teens with a wide range of DSDs. These include:
A pregnant woman who has genetic tests for her baby may learn that the test found two types of cells: one type typically found in girls and one type typically found in boys. Some babies have both types. This is called a mosaic sex chromosome abnormality. Examples are 45,X/46,XY mosaicism (pronounced moh-ZAY-iss-izm) and 46,XX/46,XY mosaicism. The DSD team can help parents understand what this test result might mean for their child.
In people with congenital adrenal hyperplasia (CAH), the adrenal gland makes too much androgen (a sex hormone that is typically most active in males) and not enough of other hormones. Both girls and boys can have CAH. Girls with CAH may have external genitals that look more like those of a typical boy. If you or another close family member has CAH, chances may be higher that your baby will have it. Our DSD team can talk to you about your risk, assess your baby if you are pregnant and help you understand the results.
If you or another close family member has an intersex condition (which affects how the genitals form) or another DSD, chances may be higher that you will have a baby with one of these conditions. They are fairly common: About 1 newborn in 1,500 is found to have a DSD. Hypospadias happens even more often. Doctors and genetic counselors from the DSD Program can talk to you about your risk, assess your baby if you are pregnant and help you understand the results. We can give you information and resources to help support you as you make choices about your family, your pregnancy and any care your baby may need.
“Ambiguous” means “not certain.” Some newborns have genitals that do not clearly look like those of a typical male or female. Doctors and parents may not be sure if the baby is a boy or girl. There are many reasons why this happens. A baby may have a penis that is smaller than average (micropenis). The hole where pee (urine) comes out may be on the underside of the penis instead of the end (hypospadias). A baby may have a clitoris that is larger than average. The flaps of skin outside the vagina (labia) may be fused. Our DSD team sees newborns with conditions like these to help find the reason for the condition and to care for and support you and your newborn baby.
Parents of newborns who have genetic tests may be told that the test found two types of cells. In most babies, girls have one type of cell and boys have the other type. Some babies have both types. This is called a mosaic sex chromosome abnormality. Sometimes test results show only one type of cell but the baby’s genitals look different from what might be expected when they have this type of cell. The DSD team can help parents understand what these test results might mean for their child.
Your child’s genitals may look different from what is typical as your child grows and develops — even if they seemed typical earlier in life. Our DSD team sees children and teens at any age whose genitals are not typical. We help to find the reason for the difference and tell whether it may affect your child’s health or well-being. Members of our team will also provide support and resources for you and your child. If your child’s condition needs any treatment, we provide this, too.
Children develop sexually and go through puberty at different ages and different speeds. Some develop more than others. Some develop in ways that are not expected for their sex. If your child develops in ways that are not average, it can be important to look for the reason why. Abnormal development may be a sign of a condition that can affect your child’s sexuality or ability to have children (fertility) or other aspects of their health.
“Amenorrhea” means lack of menstrual periods. “Primary amenorrhea” means a girl is well past the age when periods usually start (the average is around age 12), but periods have not started. (“ Secondary amenorrhea” means a girl has had periods in the past, but they have stopped.) There are many reasons why this happens. Something about the structure of the genitals and pelvic organs may be preventing periods. Hormones may not be telling her body to have periods. Many other conditions can also affect whether – and when – periods begin.
Girls may be born with no vagina, a partially formed vagina (vaginal agenesis) or a blocked vagina (vaginal atresia). Babies with this birth defect may not have a typical uterus. Some have a condition called Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome. Read more.
Scheduling an Appointment with the DSD Program
- If you would like a referral to the DSD Program, talk to your primary care provider.
- If you already have a referral, please contact us at 206-987-2056 #2 to schedule an appointment.
- If you already have an appointment, learn more about what to expect and how to prepare.
- Learn about DSD Program resources such as useful links, videos and recommended reading for you and your family.
- Providers, see how to Access Our Services.