Monday, October 3, 2011

Parents and Their Child’s Genital Ambiguity

Updated 3/2017-- all links removed (except to my own posts) removed as many no longer active. 

There is more information in the Science Daily news article than the journal article abstract (full access is not free):  Parents Feel Shock, Anxiety and the Need to Protect Children With Genital Ambiguity
Parents of babies born without clearly defined male or female genitals experience a roller-coaster of emotions, including shock, anxiety and the need to protect their child, according to a study in the October issue of the Journal of Advanced Nursing.  …….
I never had to walk a family through this as a practicing physician.  As a medical student, we had a patient which led to much discussion. 
Early surgical decisions raised strong emotions in some parents. Sian was anxious about whether she had done "the right thing," but Anne described a documentary that suggested that parents shouldn't be allowed to make decisions about genital surgery as "ridiculous."
I tend to agree with Anne.  Parents should be in on all the decisions being made.
Reconstructive genital surgery made it easier for some parents to protect and bond with their child. Medical evidence about whether the child was predominantly male or female, and how they looked, guided the parents' decisions when it came to surgery. But one mother who learnt that her child had both male and female internal organs described the news as a "double whammy."
It’s a tough diagnosis for families to have to deal with and ongoing support and care is important.  

Searching for harmony: parents’ narratives about their child’s genital ambiguity and reconstructive genital surgeries in childhood; Caroline Sanders, Bernie Carter, Lynne Goodacre;  Journal of Advanced Nursing, 2011; 67 (10): 2220 DOI: 10.1111/j.1365-2648.2011.05617.x (abstract free, full article is not)

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