Traditional medical management of children born with atypical genitals includes genital surgery during early childhood. Young children cannot give informed consent and surgery is usually undertaken after a decision made by the multidisciplinary team with parental input. Long-term outcomes are uncertain and there is scanty research supporting the benefits of surgery on physical or mental well-being. Adult patients clearly describe the distress of multiple genital operations during childhood and repeated genital examinations. In addition small but increasing numbers of adolescents are now seeking to reassign gender and previous childhood genital surgery compromises this flexibility. However the impact on a family of a child with unexpectedly atypical genital anatomy should not be underestimated. Families find adjustment to the birth of such a child challenging and genital surgery is often the only or at least the main treatment option discussed. Many multidisciplinary teams are led by surgeons committed to genital surgery. In addition complex invasive surgery may be reimbursed at high tariffs for health care providers. Psychological support although less costly is often patchy or unavailable. Whilst parents may prefer to defer genital surgery until their child is old enough to take part in the decision making process, they may also feel ill-equipped to negotiate the undoubted challenges of childhood until that time. Credible non-surgical pathways with ongoing psychological support for the family currently do not exist. Current debate about the role of genital surgery is moving from clinical outcomes into the arena of human rights. It is probable that future decisions about normalising genital surgery will not remain in the hands of clinicians. Regardless of when this may happen, action must be taken now to develop and introduce non-surgical pathways as a matter of urgency. Parents need on-going support to acquire the skills and confidence to understand complex medical information, to be able to talk about genital differences and to de-medicalise sex and gender diversity. Without such support and given a choice between surgery and nothing, parents are still likely to choose genital surgery as the best indeed perhaps the only possible treatment option for their child.
10 - 12 Sep 2016
European Society for Paediatric Endocrinology