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There are many ways you can help children and their families get the care they need.
At Boston Children's Hospital , we understand that a diagnosis of a disorder of sexual differentiation (DSDs) can cause much anxiety. You probably have a lot of questions and uncertainty about your child’s sexuality and health. Our team of clinicians in the Disorders of Sexual Development (DSD) and Gender Management Service (GeMS) provide some answers to those questions here. When you meet with our team of experts, they’ll be able to explain your child’s condition and options in more detail.
Remember that seeking out information is not only necessary but also empowering—it allows you to partner with your child’s care providers to make the best decisions for your child and your family.
What are DSDs?
What are the different types of DSDs?
The most common DSDs detected in newborns are:
Congenital adrenal hyperplasia
Mixed gonadal dysgensis
Although less common, other types of DSDs include:
Impaired testicular development
Androgen insensitivity syndrome (AIS):
What causes disorders of DSDs?
Sex development starts at the time of conception and continues through late adulthood. The normal pattern of sexual development looks like this:
Chromosomes and gonads:
Gonads are the body’s primary sex organs. They form according to a specific chromosomal pattern:
Sexual development in children with DSDs
With so many stages of sex development, there are a lot of opportunities for a fetus to take a path that not typical for a boy or a girl. When an atypical path of development is taken, the resulting condition is known as a “disorder of sexual development”.
There are several ways this can happen:
What are the symptoms of DSDs?
The symptoms of a DSD depend on what type of condition your child has.
What does “ambiguous genitalia” mean?
What causes ambiguous genitalia?
The biology behind ambiguous genitalia can be hard to understand. Breaking it down in the following steps can make it easier:
What are the symptoms of ambiguous genitalia?
Your obstetric team will most likely be the first ones who notice the ambiguous genitalia. They may see the following:
Characteristics of ambiguous genitalia in genetic females include:
Characteristics of ambiguous genitalia in genetic males include:
What is the long-term outlook for a child with ambiguous genitalia?
With proper medical management, most children with ambiguous genitalia will lead healthy and normal lives. Sex assignment and corrective surgery are necessary in allowing your child to lead a fairly normal life as a boy or a girl. As a child grows up and enters puberty, there is a slight chance that they will identify with a sex other than the one they were assigned. In this case, a gender transition may be necessary. It’s recommended that physicians wait until the child is around 16 years old before beginning the hormone therapy process involved in a transition.
Q: What’s the difference between DSDs and “intersex disorders”?
A: DSDs used to be called “intersex disorders”. The name was changed to DSD to prevent any confusion or limiting definitions.
Q: Should my child get corrective genital surgery?
A: After your child is diagnosed with a DSD, you should have a discussion with your family and your child’s doctor about optimal management, including sex assignment. Deciding on a sex assignment depends on the anatomic findings, so it will vary from child to child.
Q: When should I consider treatment?
A: After an accurate diagnosis is made, parents discusses with your family and your child’s doctor about treatment options. Parents are encouraged to take their time when consideration treatment options and not make any immediate decisions. To avoid gender confusion, it’s best to perform corrective surgery when the child is very young. At Children’s, our doctors usually perform the reconstructive surgery when a child is about 6 months old, which reduces the risks of anesthesia.
Q: Will my child be able to have children?
A: Whether or not individuals with DSD are able to have biological children depends on what condition they have. In general, people with DSDs are not fertile or have very low fertility rates.
Q: What’s the difference between gender and sex?
A: Sex is a biological term that describes someone as being either “male” or “female”. Sex refers to sex chromosomes and sex organs.
Gender refers to attitudes, behaviors and personality characteristics that are typically associated with each sex. Gender identity is how a person identifies with masculine or feminine traits. Gender is different from sex because sometimes a person can identify with a gender that is opposite from his or her biological sex.
Q: How can I help my child?
A: Emotional support and acceptance are the best things parents can offer a child who has a DSD. Having a condition that doesn’t fit with “social norms” can be difficult, and many children with a DSD may feel ashamed or become overly focused on the appearance of their genitals. To help your child from feeling stigmatized, talk openly and honestly with him about his medical condition. Encourage him to voice any questions or concerns and avoid pushing him into a certain gender. Peer support and psychosocial counseling is key in helping children and their families come to terms with the diagnosis.
If you are having trouble coping with your child’s condition, we offer many support services that can help you to develop parenting strategies and feel less anxious.
If your child has just been diagnosed with a DSD, you probably have a lot of questions on your mind before meeting with your child’s doctor. At the appointment, it can be easy to be overwhelmed with information and forget the questions you wanted to ask.
A lot of parents find it helpful to jot down questions beforehand. That way, when you talk to your child’s clinician, you can be sure that all your concerns are addressed. Remember that physicians are open to learning from families too. Attend conferences, read up on updated materials and don’t be afraid to share what you have learned.
Some questions you might ask include:
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