Elsevier

Journal of Pediatric Urology

Volume 8, Issue 6, December 2012, Pages 571-575
Journal of Pediatric Urology

Working together in placing the long term interests of the child at the heart of the DSD evaluation

https://doi.org/10.1016/j.jpurol.2012.07.011Get rights and content

Abstract

This paper articulates a number of important but often ignored questions that families have during and following the diagnosis of a child with a DSD. Recounting a personal birth experience, it illustrates the urgent need for more psychological and educational support during and following diagnosis and gender assignment. Finally, the paper describes some practical strategies for raising a child living with genital difference. It urges everyone involved in the care of children with a DSD to support parents in looking beyond initial anxiety and worry and always to place the child's long term wellbeing at the very heart of the clinical decision-making and care.

Section snippets

Gender assignment

Let me begin by recapping the events following my first child's birth:

My daughter was born following an emergency caesarean section; everyone in the delivery room congratulated us on our beautiful daughter. Some 12 h later, after telling all our friends and family our good news, a junior doctor told me – without my husband being there ‒ that her swollen labia might have testes in them.

A few phone calls later, my mother confirmed to me that at least two members of my family had been diagnosed

Raising a child with genital difference

This brings us to the second part of my paper: how to help parents imagine and understand that deferring surgery is a realistic option?

New parents are afraid, instinctively want to ‘protect’ their child and can all too easily equate that to ‘normalising’ surgery.

But it is my sense that this instinctive response has often to do with not knowing how to deal with practical issues: how to deal with babysitters, and how to deal with nurseries, what happens if someone offers to change your baby, or

Working together

Caring for a child with genital difference means you are always on alert, but once you get used to it, and once your child gets older, it is not so hard.

What is difficult is having to do it amid the isolation that can come all too easily from our children's diagnosis, and this is where we parents need your help, as medical professionals, in stimulating contact between affected families, in helping us share these experiences, with each other, with you and with the many parents who are too afraid

Acknowledgements

Thanks to Charmian Quigley, Pierre Mouriquand, Tony Caldamone, John Achermann, Imran Mushtaq, and to my husband for comments on this paper. Thanks to all members of: the AIS-DSD parent email group (USA), AISSG (UK), Grapsia (Spain) and AISNederland (The Netherlands) for their friendship, good humour and sound advice. A final thanks to all parents who –instantly!- gave permission to be quoted.

References (0)

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Presented at the Working Party on DSD Evaluation, Annecy, 16 March 2012.

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