Guest Editorial nr 1, July 2011

Becoming a DSD Dad

Some years ago I became a dad for the first time. It was unforgettable. All that excitement, trepidation, wonder, and then worry as the labour became protracted and eventually my wife had to have an emergency section. It was, I know, hugely unfair after all my wife had gone through that it was me who first got to hold this wriggly, gurgly bundle of life in the recovery room afterwards. Those few minutes till my wife arrived were otherwordly, filled with swelling pride and baffled ignorance at the challenge of parenthood.

The couple of hours after that was a haze of exhaustion and joy, and then I was chucked out by some hopelessly dad-unfriendly rules about men not being allowed on the wards at night-time, and told I could come back at ten the next morning.

This, so far, is a pretty commonplace story. That changed at ten o'clock the next morning when I became a DSD dad. My gormless smile was wiped away by hushed tones of 'ambiguous genitalia', all sorts of confusion, contradiction and insensitivity from the various doctors who crossed our path until, several days later, at last two consultants were summoned who combined clinical expertise with an appreciation that here were two bewildered new parents whose expectations had been turned upside down and who might need some support.

They gave it to us in various ways, not least in guiding us through the awful gamut of tests that followed until, another 7 days or so later, we could finally say we had a daughter, and that she had partial androgen insensitivity syndrome.

They also said there were support groups for those affected by this kind of condition and for their parents, with websites that would tell us more of what we wanted to know. I did the web research - my wife didn't exactly have the time to join in. It was depressing - the awful John/Joan experience of David Reimer cropped up everywhere; there were all sorts of other horror stories that were the result of flawed assumptions and outdated taboos propagated by both doctors and parents; there was the rightful resentment of affected adults who had been damaged physically and mentally by their 'care'; there were the protests of those who fought back insisting - and I remember the phrase vividly, and I absolutely wasn't ready for it - that we all needed to look beyond 'currently recognised gender types'.

None of this was much use to me in learning and thinking about how my wife and I could best support our daughter. The acrid mix of social taboo and burning anger that we saw on the web back then turned us away, and we made our own way for a decade or so, generally keeping the doctors at bay, and avoiding contact with others affected by DSD.

I think we have made good decisions in that time. But that was perhaps more from luck than judgement. What we could have done with back then was a reliable source of advice from both peers and doctors, and to have the chance to exchange ideas with them in ways which were open-minded and, at heart, optimistic. We wanted a space for discussion of all the hard questions we had to face on behalf of our daughter until she was able to join us in facing them; and we wanted the prospect of her having a space where she could, in time, find support from her peers in finding her own answers. What we wanted for ourselves, and our daughter, back then is pretty much what dsdfamilies.org now promises to be. Better late than never.