Access frequently asked questions our team receives.
If you are currently having concerns with diagnosis disclosure to your child, please contact us and we will set up a consult to help your family with this crucial step. Below are a few tips to get you started:
Try to be open and honest about your child’s diagnosis/condition from the start.
Use age appropriate language that your child can understand.
When discussing genitals, try to use correct terminology (i.e. penis, clitoris, vagina, labia, etc.).
Discuss genitals/reproductive system in a medical manner, just like any other body part.
Discuss differences of all sorts with you child from an early age (i.e. there are different ways to have families, everyone looks different and likes different things, etc.).
Try to not limit your child’s expression to society’s definition of gender (i.e. boy toys vs. girl toys or gender specific colors, etc.).
If your child has a genital difference, it can be hard to imagine how to share this information with others who may see your child’s genitals (via diaper changes or bathing).
We recommend using medical terminology to explain your child’s condition and letting others know that they can ask you questions.
Keep in mind, genital difference is not the result of parental behaviors or anyone’s fault. It does not make your child “less than.” This is a medical condition like any other. However, every situation is different and if you find yourself having difficulty with these conversations please contact us for support.
Also, please refer to the Handbook for Parents which provides information for parents and their children with DSDs.
Children with certain DSDs have a slightly higher chance of gender transition than does individuals without a DSD. It is currently not known what causes anyone to experience their gender identity. Doctors rely on a multitude of tests as well as what is known from past literature about specific diagnoses to aid in determining sex of rearing.
The disclaimer should always be given that your child’s sex determination is thought to be the best option, but we can never be sure. The same could be said about every individual who is born, regardless of being diagnosed with a DSD. We urge you to try not to spend too much time worrying about this.
We recommend that all children are raised as gender neutral as possible, meaning, that parents allow them to choose the toys and colors they prefer. Please keep in mind, if your child prefers toys/colors that tend to be designed for the opposite sex, this does not mean the sex determination was wrong. It is when your child begins to identify as the opposite sex, and experiences distress due to this, that you may want to consider that the determination was incorrect.
We understand that the concepts of sex, gender, gender identity, and gender expression can be confusing. Please refer to the listed definitions and diagram on our webpage, and as always, feel free to contact us for further support and consultation.
We recognize that having these discussions with anyone can be difficult, but especially your child. Below are a few reasons why it so important to talk with your child:
Children who have open and honest discussions with their parents tend to cope well with their diagnosis and learn how to discuss it with others.
Children are often confused when their medical conditions are not discussed with them which can cause them to make it much bigger or more dangerous in their mind than it actually is.
Not talking with your child can lead to mistrust of the parent, an increase in medical anxiety, and an increase in feelings of shame.
Remember, just because they are not asking, does not mean they do not have questions!
Depending on your child’s anatomy and the specific DSD they have, your child may not be able to have children. We can discuss fertility at your child’s appointment and options for your child to build a family in the future.
Some DSD conditions do have a genetic component. For some conditions, it is more likely to have multiple children with the same condition. Other DSD conditions do not seem to follow a genetic pattern of inheritance.
For more information around inheritance, we can discuss at your child’s appointment and make a referral to a genetic counselor if needed.