Strategies for Communicating with Families About Differences of Sex Development

If diagnosed prenatally:
Care of these patients is outside the scope of the clinical pathway until after birth, but communication strategies may include:

• "It is hard to know what your baby's genitals will look like based on the genetic testing we do before your baby is born."
• "Sometimes, atypical genitalia is just one sign of a medical diagnosis. Your baby's specific diagnosis may have other effects on their body. This is why it is difficult to tell you exactly what your child may experience in the future. Sometimes, even people with the same condition may have different effects. Finding out your baby's diagnosis can help us care for them and your family."
• "Some medical conditions can now be diagnosed before birth that years ago could only be found during puberty or even later; this means the medical concerns we are talking about right now may have a small, or even no, effect on your baby during their childhood."

If diagnosed postnatally:
Acknowledge that this can be a very scary or stressful time for families and share resources that are available, such as spiritual leaders, chaplains, counselors, or online resources for information/community support.

Use gender neutral language:

• 'Your baby' instead of 'your son' or 'your daughter'
• 'They/them' instead of 'he/him' or 'she/her'

If the patient is otherwise doing well:

• Emphasize the patient's overall health. Highlight that the child is eating and behaving normally.
• Balance medical details with affirmations of the child's unique qualities. "Your baby has beautiful eyes, a great smile."
• "You will meet several specialists who work together to provide the best care for your baby. The goal of this evaluation is to determine what ongoing care your child will need to receive to be healthy."

If acute medical issues must be addressed:

• Clearly communicate the acute medical concerns to ensure the focus is not solely on atypical genitalia or sex assignment
• "Your child's differences in sex development are important, and we acknowledge that this is stressful. However, this is not our only focus, and we want to make sure we are taking care of all of your baby's health needs. We will talk more about long-term sex development and do more testing as soon as they are stable."

Provide accurate language and terminology for families to use

• 'Differences in sex development' or 'atypical genitalia'
• Some families would prefer 'intersex' or 'variances of sex characteristics,' which are also appropriate
• If the diagnosis is known, give them the specific name of the diagnosis

Parents/caregivers often have a lot of questions about the next steps in management and future fertility or the ability to have a physical relationship. These are very nuanced discussions and should be done primarily with the multidisciplinary team

Acknowledge that the evaluation process may be frustrating for families

• "We may not have all the answers within the next few days or even weeks. This is often a stressful time for families with a new baby, though we are trying to do everything we can to keep you and your baby safe."

These pathways do not establish a standard of care to be followed in every case. It is recognized that each case is different, and those individuals involved in providing health care are expected to use their judgment in determining what is in the best interests of the patient based on the circumstances existing at the time. It is impossible to anticipate all possible situations that may exist and to prepare a pathway for each. Accordingly, these pathways should guide care with the understanding that departures from them may be required at times.