Magritte E. J Pediatr Urol. 2012 Dec; 8(6):571-5

DOI: 10.1016/j.jpurol.2012.07.011

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.

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Summary 

This article contributes to the foundation for a comprehensive approach to evaluation and care of children with disorders of sex development (DSD) and their families by emphasizing the importance of parents’ perspectives. Clinicians would likely agree that the long-term well-being of the child should be at the center of the DSD evaluation, but health care providers’ conceptualizations of those interests may differ from those of the parents.

Magritte, the mother of a 10-year-old daughter with partial androgen insensitivity, notes that new parents are driven by a need to protect their DSD-affected children, a phenomenon that has been documented elsewhere in the literature {1}. The desire to protect can translate into parents seeking immediate ‘normalizing’ surgery. Magritte argues that parents’ fears about managing practical issues could alternatively be addressed with simple solutions, such as being prepared with the ‘right words’ to say to daycare providers (e.g. “Oh, and if you are helping him in the bathroom …, you may notice that his genitals look a little different. Don’t be worried, this is how he was born, and he is healthy and fine.”) Similarly, apprehensions (rational or not) regarding changing the child out of a bathing suit on the beach can be addressed by, for example, simply using a hooded towel for discreet changing.

The author provides examples of how parents’ early stress reactions modulate with time and experience. Anxieties over ‘what if’ give way to the routines of everyday life. This normative process depends, in part, upon parents receiving guidance and reassurance from providers and also peer support.

The article begins with a series of quandaries from the parent perspective: “How do we cope with having to assign a gender of rearing for our own child? How do we tell well-wishers that we don’t know whether our baby is a boy or a girl? How do we deal with having to make fundamental and sometimes irreversible decisions about the care of our children if the doctors who inform us –- often the only ones we discuss care and interventions with — are also those to whom we have to give informed consent in acting on those decisions? What happens to parents and their affected child following the initial ‘evaluation’, when we leave the hospital? Which expert provides continuity of care during those long periods when we do not see the multi-disciplinary team, but during which time the questions on what to do, what to say, how to deal with this or that keep coming?” The list continues and serves as a roadmap for DSD teams aspiring to deliver care that is fundamentally patient- and family-centered.

Although not explicitly stated, the guidance of this paper places communication between providers, patients and families on the same level of priority as precision of diagnosis and sophistication of surgical procedures. We have arrived at a time in DSD care when ‘how’ providers communicate with families should be considered to be as important as ‘what’ procedures are performed. Progress toward such a realignment will hopefully come from movements in clinical care and research focusing on patient-centered outcomes {2}.

Careful assessment of parents’ concerns and questions, and thorough exploration with parents of all facets of the long-term well-being of the child, must be central to informing parents prior to asking them to make a decision about surgery.

References:   

1.  Parents need to protect: influences, risks and tensions for parents of prepubertal children born with ambiguous genitalia.
Sanders C, Carter B, Goodacre L. J Clin Nurs 2012 Nov; 21(21-22):3315-23  PMID: 22672683 DOI: 10.1111/j.1365-2702.2012.04109.x

2.  Patient-Centered Outcomes Research Institute. http://www.pcori.org/ (Accessed January 26, 2013)

Recommendation Citation:   

Sandberg D and Boyse K: F1000Prime Recommendation of [Magritte E, J Pediatr Urol 2012, 8(6):571-5]. In F1000Prime, 05 Feb 2013; DOI: 10.3410/f.717973245.793469951