The Sex Development Program team uses a multidisciplinary model to work with families as they navigate the complex decisions around treatment and care associated with a DSD diagnosis.
Our program clinicians work closely with parents and families to ensure that children are provided with accurate and developmentally appropriate information, allowing them to understand their diagnosis and be involved in decisions about their health.
Our team specializes in supporting patients and families in understanding DSD conditions and treatment. They work closely with families to ensure that they understand their child’s condition, and create an environment that allows for questions throughout the process.
When a child is born with atypical (sometimes referred to as ambiguous) genitalia, a sex should not be designated until the proper information is available. This allows the medical team to gather information and help the family make the best long-term decision for their child. While some families choose a more neutral name as they await a sex designation others choose to delay naming their child. Although this can be challenging for some families it is important to note that most babies who are born with DSDs have perfectly healthy bodies.
For many DSDs, there is a large body of research and information in the medical literature allowing for providers to improve the accuracy of predicting whether a child will grow up to feel like a girl or feel like a boy. In these situations, as soon as the specific DSD condition is diagnosed, the sex can be designated.
In other situations, it may be less clear which sex assignment may be most appropriate. We encourage families to bond with and enjoy their beautiful new child while our specialists collect and assess information as diligently and efficiently as possible.
In some DSD conditions, hormone therapy may be recommended. Two types of hormone treatments may be needed or considered. The first type replaces life-sustaining hormones. Two examples are cortisol and aldosterone. The body may not be able to make these hormones in certain types of DSDs. Cortisol is the hormone that allows the body to respond to physical stress, and aldosterone helps to maintain the body’s water and salt balance. Without these hormones, a child may develop an adrenal crisis, which is life threatening.
The second type replaces hormones such as estrogen and testosterone. In some DSD conditions, the body is not able to make the appropriate amount of these hormones. As a result, the child may not develop breast tissue or have growth of the penis as typically expected at puberty. The pediatric endocrinologist gathers information about the child’s hormone status to determine which of these treatments may be necessary or helpful.
In some cases, surgical procedures may be considered. In the past, these procedures were sometimes done without consideration for the reversibility of the surgery or the patients’ future sexual function. This is no longer the standard of care and is not in line with the current surgical practice of the Sex Development team at Lurie Children’s. We presently utilize the expertise of our multidisciplinary team to ensure that patients are provided with compassionate care and that information is provided to parents and patients in a transparent nature that helps determine if any surgical care should be considered.
Mental Health Support
Mental health support is a core component of the Sex Development Program. Many families benefit greatly from working with a psychologist to better understand their or their child’s DSD condition. Our psychologists have specialized training and can help patients and their families at any stage in their care.
Our psychologists often provide support to families in a number of ways, such as:
Supporting the family of a newborn or toddler while they learn about DSD and their treatment options
Helping parents explain DSD-related issues to their family and friends
Supporting parents as they calibrate to the adjustments of caring for a child with a chronic medical condition
Partnering with parents to develop age-appropriate ways to explain DSD-related issues to their children
Helping children overcome worry and stress related to taking medication, undergoing tests or medical procedures, and hospital stays
Helping children cope with worry and stress related to gender identity, or body changes associated with puberty
Helping children and adolescents foster skills to manage interpersonal relationships and maintain healthy self-esteem
Facilitating peer-support opportunities for families with DSD through social gatherings designed to promote a sense of community.
Promoting wisdom in shared experiences through our program's involvement in Lurie Children's ParentWISE program
There are a number of ways that patients and families access our mental health services. Some families choose to meet with a psychologist once or twice a year while others choose to meet more regularly.