Parental choice on normalising cosmetic genital surgery
A wonderful response to the BMJ article, thank you Arlene. It would be my dream that all parents get to read this before they start making decisions on behalf of their intersex child. -Mani.
In response to:
- British Medical Journal article
- Normalising cosmetic genital surgery, BMJ 2015;351:h5124
- http://dx.doi.org/10.1136/bmj.h5124 (Published 28 September 2015)
The editorial by Liao et al and subsequent responses highlight the ongoing clashes of opinion among various clinician specialists and people who live with diverse genitalia. Although the process of gender assignment is based today on more than genital appearance, it risks underestimating the uncertainties of each child’s future gender identity. Recent scholarship using mixed methodologies demonstrates that 25% of adults with diverse sex development identify and live in ways that defy simple “male vs. female” categorization(1). Even in the hands of the most dedicated clinicians, research and care that aims to emphasize functional and psychosocial outcomes does not always incorporate this reality. A non-medicalized (2) approach to education that promotes parents’ acceptance of natural variation is sorely needed to change families’ understanding of their options as either doing surgery or “doing nothing.”
Clinician and family perceptions of the availability and adequacy of psychosocial support remain at odds. Although psychological support was offered to all new patients in every clinic in one European study (3), another study found that while many parents felt a strong need for psychological support, half felt the support they received was inadequate. (4) This does not imply that offering clinical psychological support is a token gesture. It does indicate a need to shift the energy of researchers toward development of meaningful, nonsurgical interventions.
In addition to such simple measures as having a team member reach out to families periodically, peer support is an inexpensive means to promote acceptance and integration of DSD into family life. Peer support groups view their role as complementary to clinical services and are eager to create partnerships with clinicians. (5) Support coming from those who have “walked the walk” is highly valued by families who often feel isolated. Seasoned parents with well-developed coping skills can help families develop confidence and cultivate parenting strategies that support recognition of children’s autonomy and right to make their own choices.
Educating parents with standardized information is ideally part of routine care from the time of diagnosis. Assimilation of complicated information takes time and repetition. Objective assessment of parents’ comprehension is vital given the recent alarming finding that 40% of parents reported they did not completely understand their child’s diagnosis.(4) Balanced education includes disclosure of relevant medical and social controversies. Families should be made aware of legislative changes and human rights statements to avoid catastrophic scenarios in which older children accuse parents who made irreversible treatment decisions of ignoring information that was widely available at the time.
As a physician who is also a parent of adults with reproductive difference, I know that clinicians, advocates, families and patients of all ages share a goal of promoting the health, happiness, and resiliency of people born with unexpected sex characteristics. If there is a secret to raising healthy children, it is to accept and focus on what they are, instead of what they’re not. Changes happening everywhere challenge us reimagine intersex, not as disease, but as a way of living in the world. It is time for clinicians and families to develop a mutual understanding that “our diversity – the differences between our experiences and perspectives, as well as the shapes of our bodies – is something that we should celebrate and protect, in all its forms.”(6)
Arlene Baratz MD
Board of directors, family and medical adviser
Androgen Insensitivity Syndrome- Differences of Sex Development Support Group
Advocates for Informed Choice
Temple University School of Medicine
Allegheny Health Network
Department of radiology
312 East North Avenue
Pittsburgh PA 15241 USA
Schweizer K, Brunner F, Handford C, Richter-Appelt H. Gender experience and satisfaction with gender allocation in adults with diverse intersex conditions (divergences of sex development, DSD). Psychology & Sexuality. 2013;5(1):56-82. doi: 10.1080/19419899.2013.831216.
Streuli JC, Vayena E, Cavicchia-Balmer Y, Huber J. Shaping parents: impact of contrasting professional counseling on parents' decision making for children with disorders of sex development. The journal of sexual medicine. 2013;10(8):1953-60. doi: 10.1111/jsm.12214. PubMed PMID: 23742202.
Pasterski V, Prentice P, Hughes IA. Consequences of the Chicago consensus on disorders of sex development (DSD): current practices in Europe. Archives of disease in childhood. 2010;95(8):618-23. doi: 10.1136/adc.2009.163840. PubMed PMID: 19773218.
Bennecke E, Werner-Rosen K, Thyen U, Kleinemeier E, Lux A, Jürgensen M, et al. Subjective need for psychological support (PsySupp) in parents of children and adolescents with disorders of sex development (dsd). European Journal of Pediatrics. 2015. doi: 10.1007/s00431-015-2530-8.
Baratz AB, Sharp MK, Sandberg DE. Disorders of sex development peer support. Endocrine development. 2014;27 (Hiort O, Ahmed SF (eds): Understanding Differences and Disorders of Sex Development (DSD). ):99-112. Epub 2014/09/24. doi: 10.1159/000363634. PubMed PMID: 25247648.
United Nations Office of the High Commissioner for Human Rights. Opening remarks by Zeid Ra'ad Al Hussein, United Nations High Commissioner for Human Rights at the Expert meeting on ending human rights violations against intersex persons