Guest post by a parent of a child with mixed gonadal dysgenesis.
The ultrasound. And with it, the excitement of being able to discover the sex of your growing baby far sooner than earlier generations. A modern rite of passage along the pathway of prospective parenthood.
Perhaps that excitement fraudulently obscured the reality that would unfold. Perhaps that’s why, after my partner’s fourth scan, alarm bells weren’t ringing that we still couldn’t ascertain the sex. No red flags waved. Not then. Not for us. Nor for the doctors who should have realised that something wasn’t quite as it usually was. Who might have been able to, in some small part at least, have prepared us for what was trundling our way.
Instead, at 11pm on the night of the birth, we were hastily informed our baby would be flying out to the nearest Newborn Intensive Care Unit.
That flight heralded a protracted period of tension and worry that, thankfully, passes most parents by. It triggered a whirlwind of every test that can be imagined – and many more that can’t – as the medical profession strived to determine our baby’s sex. It was, and still is, such a confusing, terrifying time. Not really knowing what was happening or what the future might hold for the little one.
As I reflect on the journey this has been, and continues to be, I cannot help but notice the vast amounts of medical involvement necessary, at every milestone, when a baby is born with ambiguity.
For example, this week, my child and I attended yet another appointment with a doctor. It was a second visit as I sought a recommendation to a Pediatric Endocrinologist. This is the person who deals with hormones for children, who would help my child to start puberty, (is puberty privilege a thing?) and, in doing so, hopefully offer the prospect of as normal a life as possible.
Right now, I also have to figure out where to take him to see a Pediatric Urologist. Wherever that may be, it will certainly involve a seven hour car journey. And who knows how long we’d have to stay there. A lot of the questions about how this will affect him psychologically, or what puberty will be like for him, remain unanswered. This is because no-one can actually answer them. These problems don’t appear to have been looked into on a sufficient enough scale that would help establish the best course of action.
So much of the experience of intersex people is affected by a severe lack of research. It seems that science and medicine are fumbling in the dark when presented with intersex cases. The inability to answer these questions is, in part, due to the involvement with other groups.
When intersex is added to LGBT, that then indicates the major focus of advancement for the benefit of intersex people is a social issue. Yes, there are a lot of misunderstandings about intersex conditions and awareness does help. Certainly, there are intersex people who do feel invisible, not accepted for the identity they are, but that is a conversation for another article.
There is a bigger issue, for myself and other parents at least, which is the relationship with the medical community. I know that my child will be taking hormones for the rest of his life. He cannot develop and grow without them. His entire life, health and growth, will be affected by the standards of care received from the medical professionals.
So, when intersex is included with other groups, successes for that unrelated group become a societal misunderstanding that intersex is also benefiting from those successes. Thus, social awareness becomes the primary focus of advocacy and vital questions are never asked – because a person unaffected would never know they required asking. Much needed medical understanding has become a casualty.
The changes needed for the benefit of intersex children are, first and foremost, founded in the medical field. Whether this is trying to prevent unnecessary cosmetic surgeries or changing the level of difficulty currently faced to develop as normally as possible. In addition, the scarce availability of medical care is quite daunting – seven hour car ride? Bleh! It can deter people from seeking help.
Any group that wants to tack intersex onto their advocacy, yet doesn’t think the medical experience is relevant, is only working on a very small part of the needs of the whole group.
A huge benefit for intersex children, teens and adults would be advancement in research on the medical side for addressing intersex diagnoses.
As a wise woman once said:
“We don’t want the next generation of intersex children to experience what we do. We want them to have a better experience.” – Claire Graham
That remains one of the most profound statements about what the direction of intersex advocacy should be. The experience we should be trying to make better must absolutely include the medical arena.