10 October 2011
Parents talk about genital ambiguity
by George Atkinson
New research in the Journal of Advanced Nursing shows that the parents of infants born without clearly defined male or female genitals experience a roller-coaster of emotions, including confusion, shock and anxiety.
"The parents we spoke to went through a dynamic and evolving process," says Dr Caroline Sanders, from Alder Hey Children's NHS Foundation Trust in Liverpool, UK. "They had to deal with challenges relating to their lives, emotions and beliefs and one of the mothers, Faye, experienced serious abuse because people thought her daughter was different. At the other end of the scale, Imogene was delighted when a scan showed that her child, who she felt looked like a girl, was female inside."
Dr Sanders teamed up with Professor Bernie Carter and Dr Lynne Goodacre from the University of Central Lancashire to carry out the study. All the children involved had disorders of sex development, which include conditions where the chromosomes, testicles, ovaries or sexual anatomy were not as expected. It's estimated that one in 300 babies are born with concerns about the development of their external genitalia and in 1-in-5,000 births the baby's sex is unclear.
The parents involved said the events following their child's birth were "confusing" and "chaotic" and led to bewilderment and loss of orientation. Several parents recalled that some healthcare professionals had been vague or hesitant when discussing their child's genital uncertainty, which heightened their anxiety. This was compounded when healthcare professionals referred to their genderless child as "it", inferring that their child was a "freak."
Many of the parents kept the gender confusion private. "You couldn't explain it because you didn't really know" said Gina. One mother, Maria, felt the need to be open about it, but adds that: "My husband wouldn't have told a soul... because it is genitalia and is still looked at as something that's taboo."
Mother Faye found local people's interest in her baby cruel, intrusive and alarming. She recalled people stopping her in the street, pulling the covers off her baby and saying "oh you'd never know would ya?"
Many of the parents were concerned about whether they had made the right decision about their child's gender and worried about their children feeling different to others and experiencing uncertainty in adolescence.
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."
"Our study revealed the serious emotional traumas and dilemmas that having a child with ambiguous genitalia creates for parents," said Dr Sanders. "It underlines the need for greater sensitivity and understanding about the issues these parents face. Health professionals need to be aware of the impact that medical language has on parents, particularly in the early stages, and communicate with them clearly and regularly, checking that they understand what they are being told."
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Source: Journal of Advanced Nursing