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Parental choice on normalising cosmetic genital surgery

BMJ 2015; 351 doi: https://doi.org/10.1136/bmj.h5124 (Published 28 September 2015) Cite this as: BMJ 2015;351:h5124

Rapid Response:

Re: Parental choice on normalising cosmetic genital surgery

Dear Sirs

As a group of paediatric endocrinologists who care for children with a range of life-long genetic and hormonal conditions that present in early life, we are often faced with children with atypical genitalia in whom a condition broadly grouped as a “disorder of sex development” is suspected. Within this context, we were disappointed by the recent editorial by Liao et al (1) and feel well placed to address the erroneous assumptions that have been stated.

The authors have relied on the contents of a review article published 25 years ago to highlight the apparent priority given by ‘paediatricians’ to penile size as the determinant of sex assignment. Much has changed for the better in the interim, particularly recognising the complexity of the decision-making which needs a multi-disciplinary holistic approach and which totally involves and supports the parents. Although we are certain that the authors know this, we highlight the recent report from the International DSD Registry as an example of this change in practice (2) and we refer the authors to the UK DSD Guidance originally published in 2011 and then revised in 2015 and which was endorsed by several professional societies (3). In addition, the authors are not consistent in their argument. They refer to the penis as the focus of their case, yet then rely on their own historical studies on outcome in females with congenital adrenal hyperplasia (CAH) who have had normalising cosmetic surgery. Thus, we are puzzled as to what studies in females with CAH have to to do with boys with small penises.

Surgical techniques do change over time, not only in this area of practice, but across the whole of medicine. Indeed, it would be worrying if changes do not occur. Although in the past a great deal of emphasis has been placed on surgical interventions that have been aimed at aligning the appearance of the genitalia with the sex of rearing, it is important to highlight that practice has changed considerably, with a greater emphasis being placed on consideration of functional and psychosocial outcomes rather than simply cosmetic appearance. So it is rather misleading of the authors to state that ‘paediatricians’ are asking for parents to opt for experimental surgery on their children without any supporting evidence. In fact, we are very concerned that several statements by the authors do not refer to the source of the evidence. What do the authors mean that 'parents are not given sufficient time to appreciate their child etc'. Do they not recognise the encouraging development of truly MDTs for the management of DSD whose members practice the aspects that the authors allege are lacking? Whilst we agree that there is a need for more support for the new parent, stating that current service provision is merely a token gesture of psychological support is an affront to the increasing numbers of child clinical psychologists now becoming key members of neonatal teams as well as the DSD team at major centres across the UK.

The general reader unfamiliar with the complexities of DSD management will take the view from this editorial that paediatricians have been obdurate and one-dimensional in their approach to the care of the child suspected of having a DSD. On the contrary, paediatricians, together with their colleagues in the MDT have been at the centre of change. Initiatives such as the Chicago Consensus on DSD, the EU- funded EuroDSD and DSDlife projects, the MRC-funded International DSD Registry, the UK DSD Guidance, the biennial International DSD meeting, the Scottish Audit of Atypical Genitalia, the EU COST action DSDnet and the DSD Working Group of the European Society for Paediatric Endocrinology would not have been possible without the drive of paediatricians. Paediatricians have also been at the forefront of helping and advising support groups such as AISSG and Living With CAH and developing web resources such as dsdfamilies.org. In this vein, the recent support offered by the NIHR-RD TRC and the Chief Scientist Office of Scotland for the development of CAH-UK, a consortium of paediatric endocrinologists with an interest in the care of children with CAH from several tertiary paediatric endocrine centres is additional evidence of the activity in this area. The authors know of most, if not all, of these innovative activities but have failed to recognise these contributions.

By submitting this riposte, we as ‘paediatricians’ hope to assist the generalist in receiving a balanced view on this complex area of medical practice.

S. Faisal Ahmed, Samson Gemmell Chair of Child Health, University of Glasgow
Carlo Acerini, Senior Lecturer, University of Cambridge
Tim Cheetham, Senior Lecturer, University of Newcastle
Justin Davies, Consultant in Paediatric Endocrinology, Southampton University Hospitals Trust
Ieuan A. Hughes, Emeritus Professor of Paediatrics, University of Cambridge
Jeremy Kirk, Consultant in Paediatric Endocrinology, Birmingham Children’s Hospital NHS Trust
Nils Krone, Reader in Paediatric Endocrinology, University of Sheffield

1. Liao LM, Wood D, Creighton SM. Parental choice on normalising cosmetic genital surgery. BMJ. 2015 Sep 28;351:h5124. doi: 10.1136/bmj.h5124.
2. Kolesinska Z, Ahmed SF, Niedziela M, Bryce J, Molinska-Glura M, Rodie M, Jiang J, Sinnott RO, Hughes IA, Darendeliler F, Hiort O, van der Zwan Y, Cools M, Guran T, Holterhus PM, Bertelloni S, Lisa L, Arlt W, Krone N, Ellaithi M, Balsamo A, Mazen I, Nordenstrom A, Lachlan K, Alkhawari M, Chatelain P, Weintrob N. Changes over time in sex assignment for disorders of sex development. Pediatrics. 2014;134:710-5.
3. Ahmed SF, Achermann JC, Arlt W, Balen A, Conway G, Edwards Z, Elford S, Hughes IA, Izatt L, Krone N, Miles H, O'Toole S, Perry L, Sanders C, Simmonds M, Watt A, Willis D. Society for Endocrinology UK guidance on the initial evaluation of an infant or an adolescent with a suspected disorder of sex development (Revised 2015). Clin Endocrinol (Oxf). 2015 Aug 13. doi: 10.1111/cen.12857.

Competing interests: No competing interests

08 October 2015
S. Faisal Ahmed
Professor of Child Health
Carlo Acerini, Tim Cheetham, Justin Davies, Ieuan A. Hughes, Jeremy Kirk, Nils Krone,
University of Glasgow
South Glasgow University Hospitals