In many cases, DSDs are diagnosed later than the newborn period, sometimes even in adulthood. When DSDs are diagnosed in childhood after the newborn period, the case may be handled via the same steps outlined above and in Figure 2.1 “Protocol Summary”, with the following differences:
Consultation is generally less urgent; assuming no emergency metabolic concerns exist, the team can take more time in ordering tests, conducting the case conference, and advising the family. They should nevertheless be aware that often the family will experience considerable anxiety during the waiting periods. The team psychologist or social worker can help with this, as can peer support volunteers.
If the child is old enough to be aware of the examination, even more care should be taken in minimizing the number of examining medical personnel and in treating the child and parents with privacy and dignity. In this case, the examiner should continually engage the child during the examination, using age-appropriate explanations to describe exactly what the examiner is doing, whether it is a visual exam, physical exam, or an exam using any medical device. A bathrobe brought from home can provide comfort and warmth in the examining room.
If the child is old enough to be aware of the increased medical attention, the mental health and social work professionals on the team should help the parents explain to the child what is happening to the extent the child can understand. These explanations should be honest, reassuring, and loving. Pictures often help children understand bodily issues. (See Chapter 5 CORE REFERENCES AND RESOURCES.) Children should be encouraged to ask questions and voice fears and concerns, and be reassured that they are not defined by their diagnoses.
The parents should be offered help in dealing with school personnel and other care givers who may need to be apprised of the situation; for help with this, see the companion “Handbook for Parents” (available through http://www.dsdguidelines.org).
If the child is approaching the age of puberty or is experiencing puberty, a gynecologist or adult urologist may be asked to do the examination and therefore to function as a member of the multidisciplinary team. Additional assessments that evaluate the environment of the child’s community are critical during puberty. Any evidence that the child feels targeted, bullied, or in other ways socially or emotionally at-risk must be identified and interventions provided.
In a small number of cases, the team will find that the child’s initial gender assignment may not accord with the self-identity of the child. In this instance, assuming follow-up care confirms an incorrect gender assignment, the team should provide support to the child and family during the child’s social gender transition. The need for psychosocial support for the parents in this situation cannot be overestimated;[Colapinto2000] when a child’s social identity changes, so does a parent’s. Though the child (and oftentimes his or her peers) will likely find the social transition a relief,[Colapinto2000 Diamond1997 ] the parents will often find it a substantial source of distress. In such cases, parents should be connected with the mental health care they need for support and psychoeducation, and the gender transition should be managed by a health professional experienced in this area, even if it means traveling to another town.