Making good medical decisions for a child is one of the serious responsibilities of parenthood. With differences of sex development (DSDs), these decisions may be particularly difficult. Our team helps prepare families for each decision point. The following are some of the issues and options many families eventually face:
- Sex assignment: The gender parents choose to raise an infant if the sex is not obvious
- Hormone therapy: Needs and options for hormone replacement throughout development
- Surgery: Needs and options for infants, adolescents and adults
- Mental health support: Healthy social, cultural and psychological attitudes of parents and the growing child
Our goal is for each child to live a long, healthy, happy life. A DSD creates complex questions for parents early in the child’s life. The family and medical team must work together to make the best choices for the child and family. As the child is able and the family feels it is appropriate, we involve the child in decisions as well.
Families find it very useful to work through key decisions with trusted members of the care team. The child’s specific condition determines which members of the medical team are most involved. These specialists have significant experience and have chosen to specialize in DSD care. They work with you to be sure that you understand your child’s situation, and you should feel comfortable asking about any recommendations or guidelines. Families also find significant support from trusted family members, friends, support groups, advocacy organizations and their religious support system.
When a child is born with ambiguous genitalia, a sex should not be assigned until the proper information is available. Unfortunately, this also means waiting to name the child, which can be hard for parents. This waiting, however, allows the medical team to gather information and help the family make the best decision possible.
For many DSDs, there’s much information available in the medical literature and experience to be accurate in predicting whether the child will grow up to feel like a girl or feel like a boy. In these situations, as soon as the cause for the DSD is known, the sex can be assigned.
In other situations, however, predicting how the child will feel as he or she grows up is harder. In such cases, we take many things into consideration. These include the child’s appearance, the body’s ability to make certain hormones, the likely ability for sexual function as an adult and fertility potential as an adult. We encourage the family to bond with and enjoy their beautiful new child while we collect and assess this information as diligently and efficiently as possible. We are then able to provide information and guidance to the family to make the choice for the child.
Two types of hormone treatments may be needed or considered in DSDs. The first type replaces life-sustaining hormones that the child must have. 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. With some DSDs, the body isn’t 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.
Surgery may also be a consideration for a child with a DSD. Some surgeries are necessary and others are considered elective, or optional. For example, a child born without an opening for urination experiences life-threatening complications if such an opening is not constructed. Most surgeries are not emergencies in children with DSDs. Such surgeries may include a biopsy (obtaining a sample) of the gonad to determine whether it has ovarian and/or testicular tissue, surgery to separate the opening to the vagina and the urethra (the tube through which urine exits the body), surgery to reduce the size of a large clitoris or surgery to remove a gonad that is at risk to develop cancer.
Over the years, the approach to surgery in children with DSDs has changed. In the past, attention was primarily on making a child appear as close to the desired gender of rearing as possible and performing surgeries as soon as possible. Unfortunately, this approach and some older surgical techniques didn’t have the desired results and/or didn’t preserve sexual function.
A better understanding of the desires of individuals with DSDs has led to our current approach. Surgeries that aren’t absolutely necessary are weighed carefully and discussed thoroughly with the child’s family as they relate to timing and functionality. Personal values are given careful consideration and respect. In addition to the surgeons, our team has a well-informed ethicist and a psychologist with experience helping families think about elective surgeries. Thoughtful discussions and reflection help highlight cultural and religious factors important to the family and individual.
We are committed to involving the child in decision making for surgery when this is possible or desired by the family. We believe it is very important for the family to fully understand the functional and cosmetic outcomes of surgery.
Mental Health Support
Many families in our care may benefit greatly from talking with a psychologist on our mental health team about issues related to DSD. Our psychologists have specialized training in psychosocial and mental health issues related to DSD and can help families at any stage in their care.
Our psychologists often provide support to families in a number of ways, including (but not limited to):
- 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 ongoing support groups and through social family outings
We match the diverse support needs of our families by providing them with an array of ways to meet one-on-one with our child and adolescent psychologists. Some families choose to meet with a psychologist once or twice a year and some choose to meet more regularly. Other families choose to meet with one of our psychologists just once in order to have this relationship established should a need for support arise at some point in the future.
To find out more information about our clinic’s mental health support, contact our Danielle Lee at 312.227.6203 or e-mail firstname.lastname@example.org.