Why Intersex Has Nothing To Do With CAH

*Disclaimer* Everyone is entitled to their own opinion on this matter, and I am just stating mine.

Congenital Adrenal Hyperplasia is a genetic condition in which the body lacks the ability to produce the hormone cortisol. There are three types of CAH:

  1. Salt Wasting or ‘Classical’- generally the most severe form.
  2. Simple Virilising or ‘Non-Classical’- the body has no problem with maintaining salt levels in the body, but still can’t produce cortisol.
  3. Late onset- sometimes patients with this type may not require any steroid treatment, and it may only be picked up when trying to conceive.

Now we’re about to get scientific, so bear with me. Sometimes (I stress this, only about 1 in 36,000), girls with CAH (particularly salt wasting) may be born with what is called ambiguous genitalia (AG). AG can take shape in various forms, where sometimes the clitoris can appear slightly larger than average, sometimes it may be much larger, and rarer, the genitalia may resemble male anatomy. Despite this, all girls will still be girls- they still have all the female reproductive organs, and with corrective surgery their genitalia can be made ‘normal’ again. Again, I stress that the prevalence of CAH is between 1 in 10,000 and 1 in 18,000 whilst AG in CAH is around 1 in 36,000. Very often, girls with AG will need no surgical intervention, or may only need a procedure when they are older. However, sometimes surgery in infancy is not only a medical necessity, but an important choice for parents to make.

Currently, there are action groups campaigning to end so called ‘unnecessary’ surgical procedures on infants, and this is angering many of us in the CAH community. It would be nice for us to say that we live in a community that is accepting towards all people in all walks of life. The truth is, we do not, and children can be brutal towards their peers. As a parent, you also want your children to be able to fit in the best they can, and if you can offer a procedure that will not only improve the cosmetics of the AG, but also erase the medical problems such as urinary tract infections, problems with urinating and unnecessary pain, why wouldn’t you? The other bonus with having the procedure early on in life is that the child won’t remember it. There’s no denying it, that kind of surgery must be painful. If you leave a child with AG until they are older, this will be much worse, and more embarrassing I could imagine.

The point that these activists are making is that we shouldn’t subject our children to fitting in with ‘social norms’ and that we’re making decisions for them which could wait until they can fully consent. Whilst I think these are both valid points, I also think that in this day and age, they are utter rubbish. What happens when your child is getting changed for swimming on a school trip and the other children notice that your child has AG, and then your child is subject to bullying from their peers for something you could have presented. What happens when they get constant UTI’s which poses issues anyway, but is much more dangerous with a child on steroids? What happens when they’re in constant pain and it’s your job to tell them that you refused surgery on the grounds that they were too young? Obviously, it has to be the choice of the parents and families, and everyone is entitled to their choice, however, if you’ve been recommended surgery for your child by a consultant, you probably want to go with it. If you were told by a cardiologist that your child needed surgery or they may be affected in their childhood, I’d imagine you’d unquestioningly follow their advice- so why is this any different?

The other thing that these activists are trying to do is label patients with CAH as intersex or hermaphrodite. So not only do people not like these terms due to the negative connotations associated with them, but they are also massively out of date. Instead, CAH is sometimes labelled as a Disorders of Sex Development (DSD), which still isn’t nice, but it is what it says it is. CAH is in no uncertain terms, a disorder of sex development. However, what it is not is intersex. Intersex generally means that someone is born somewhere between the two sexes, not entirely female, not entirely male. Girls born with AG in CAH are completely girls. Their genitals may resemble the male anatomy, but in reality, the genitals are female- they’ve just been over exposed to hormones which has essentially not allowed their female genitals to stop growing. I personally think that it is disgusting that in this day and age we still use words that have such horrible connotations. Of course, if you want to refer to yourself as intersex, go right ahead! But please do not force this label onto other patients, particularly those with CAH. Maybe one day, intersex will be a term that is no longer associated with negative things. However, as we’ve seen from people with a disability trying to claim back the word ‘cripple’ this does not always work, and there will always be people who would rather not like that label.

In the end, it’s all a personal decision that you need to make with the support of your family with your child’s best interests at heart. Bashing others for listening to the advice of their doctors is wrong. What you choose for your child is just that- your choice.


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