“You have to start thinking about surgery”

Posted on by fizzgigwp

It was almost like a mantra with the doctor tasked with looking after our kid. He’d obviously never been trained in any alternatives. For him the only possible choice was surgery as soon as possible.

And oh what a surgery they had in mind. Because the plan they had was to essentially erase what’s there and only leave the bits that make my kid look normal (whatever the fuck that means.) It would have required what’s called a destructive surgery where they use surrounding tissue to construct the end result.

The destructive part is that you can never go back to the way it was. You can never get sliced nerve endings back. You can end up with dead spots where you have reduced or no feeling at all.

The more we looked into it the more horrified we became thinking of what they wanted to do to our kid. And they thought this would be helping him. That it would make him feel normal.

One surgeon even said that being able to pee standing up was vital for his psychological well-being. Imagine genuinely believing that the ability to pee standing up is the defining psychological attribute for masculinity.

We asked time and again if the surgery was medically indicated. Most of the time they avoided giving a direct answer. Some were honest and said no. So we held off. No one could give us a medical reason to go ahead with the surgery. It all boiled down to wanting to make my kid look normal.

Normal is a tricky thing. What’s normal to one person isn’t to another. But when we’re talking about genitals I think most people have a concept in their head that has been shaped by media, porn, and outdated sex ed.

You probably even have an image in your head right now of what “normal” genitalia looks like. I’m willing to bet that it includes everything you see when you look down at your own. And that’s where I’m going with this.

Because normal is what you know. What you see when you look at your own is what you’ve known all your life. It’s normal to you. So how could it be normal to make it look like someone else’s?

This also leads me into my next question, which question would you rather have when your kid grows up. “Why did you let them perform cosmetic surgery on me before I was two?” or “Why didn’t you let them perform cosmetic surgery on me before I was two?”

Because those are very different answers. One boils down to “we did what we thought was best” but there’s no going back. The other boils down to “We wanted you to be able to make an informed choice about your own body” and then you kid can choose if they want the surgery. We chose the latter.

Till next time…

A little more detail

Posted on by fizzgigwp

I’ve had some good feedback about the first post and so I’m going to go into some more detail about the first couple of days after our kid was born. Our kid was 6 weeks premature so went straight into the NICU. All the usual newborn checks were done but there was obviously something they weren’t telling us. And looking at my kid even I could tell that not everything was as we’d expected. After all, we’d been told our kid was a girl but when they lifted them out of the c-section incision they said we had a healthy boy.

There was quite a bit of confusion going around but we were focused on having a healthy baby rather than anything else. And part of the problem is not enough doctors and nurses have knowingly seen intersex babies for themselves. I say knowingly because, as they cover in the documentary I linked to in the first post, lots of intersex people show no outward signs of it and it’s not until they need to see a doctor or get a scan for something invasive that they even know themselves. Speaking of doctors visits you might want to go watch the video from my last post from an intersex person with their tips on how they survive them.

And while I’m linking things I’ve got something I’d like you to listen to, it’s a podcast series. Doesn’t take too long but it does cover a lot of the reasons why gender is never as simple as we think it is. Here you go, especially the Gonads: X & Y episode.

Ok, where were we? Ah yes, the hours after our kid made their entrance. My clearest memory from a couple of the doctors was the look of pity on their faces. Pity mixed with shame. They looked at our kid as if they were broken. I’m not sure if I can ever forgive them for that. Because it made US think there was something broken with our kid. So when they started talking a day or two later about surgery at six months to two years we felt like we almost had to.

But that first day we were told we would just have to wait for the tests to come back to tell us what the problem was. They took blood to test his chromosomes, they inspected my kids genitals looking for clues, they did an ultrasound to check their gonads. And then they said we had to wait, they couldn’t give us a definitive answer. I know now that the answer to why our kid is intersex is immaterial. It doesn’t change how we’re raising them or how we feel about them.

The waiting is awful because you feel like you aren’t doing anything. So while we waited we just immersed ourselves in looking after our kid as best we could.

Till next time…

So you’re the parent of an intersex kid.

Posted on by fizzgigwp

Part 1

First up let me say I’m not a writer. So fair warning this may meander a bit. That being said…

Your baby is finally here! And you’ve just been told by the doctor(s) that there’s a problem. Every prospective new parent’s nightmare. And then they say things like ‘disorder of sexual development’ and ‘not everything is right down there’. Almost immediately they start talking about ‘normalising surgery’, ‘corrective procedures’, and ‘don’t worry, we can fix this’.

Listen to what they say but don’t make any hasty decisions. Don’t let them talk you into anything. I know your first instinct is to follow their advice and do the right thing by your baby. But the right thing is actually to let your kid decide for themselves. Which means waiting until they can make an informed decision. This is going to require some sacrifice on your part.  Remember that that’s your kid’s body, not yours. Surgeries on kids too young to consent should only be performed where medically necessary and changing your baby’s genitals to ‘normalise’ them is almost never medically necessary. We’ll get into more detail on that later.

First up you’re probably wondering what to do now? Well take a moment to remember that you more than likely have a completely healthy baby. Their intersex status doesn’t change that. So you might have had a name picked out but now it won’t suit so you might need to go back through your list of names you liked and pick a different one. You might look at your kid and decide on a different name entirely. Friends and family will badger you for name, gender, weight etc but it’s up to you when and what you tell them. Some families will be open and accepting of difference, others won’t be.

Over the next few days they are going to do some tests on your kid like an ultrasound to see if their gonads are ovarian or testicular. They’ll do a chromosomal test to see where your kid sits on that spectrum. This gives you a path to follow. You might have thought you were having a boy or a girl but gender is a spectrum not a one or the other thing. That path is how you choose to raise your kid. You’re going to be expected by society to chose male or female for them. We chose male because our kid has testes and is chromosomally male. If our kid chooses a different path later on we will support that but at the time we went with the information we had.

You’re likely going to have a lot of preconceptions about what intersex is and isn’t, I know I did. I recommend you go watch Me, My Sex, And I. Go ahead, I’ll wait.

All caught up? Good, then we’ll continue.

Those first few days are going to be nerve racking. You’re going to keep wondering if you did something wrong (you didn’t), you’re going to worry that there’s something wrong with your kid (there isn’t), and doctors are going to insist that you start planning for a surgery before your kid is 2 years old (big nope). What you need to focus on is that being intersex is a permanent part of your kid like their hair or their nose. No surgery is going to change that. So move forward with the information you have and raise your kid just like you planned. You just need to factor them being intersex in as well.

If you’re anything like me you’ll overthink a lot of stuff and worry a lot. In part that’s why I’m writing this. It’s not just for you, it’s for me to get a bunch of these thoughts down and out of my head and hopefully help some other parents in the process. Our kid is 6 now so we are only part way through our journey. But we’ve learnt a few things along the way.

First find a doctor you can trust. Anyone who pushes for a cosmetic surgery on a toddler or younger isn’t someone who has yours or your babies best interests at heart. Unless it’s medically required they shouldn’t be pushing for surgery. Don’t agree to let them take photos of you kids genitalia for medical journal or to get a colleague’s opinion on your kids case. You are your kid’s advocate and they need you to speak for them on this when they can’t. 

Seek out support organisations in your area. You aren’t alone in this and neither is your kid. At the very least you have each other. And you’re going to need each other. But there are organisations like IHRA (Intersex Human Rights Australia or IPSA (Intersex Peer Support Australia) and others out there. You’ll probably find there is a local group. What you might not find is resources for parents of intersex kids, especially relating to the early days. So mainly that’s what I want to write about.

Because I looked for a lot of answers early on and didn’t find much. There aren’t a lot studies. Which makes sense because if you had an unnecessary surgery performed on you before you were old enough to speak in sentences you’d probably be disinclined to want to discuss it with the medical profession.

I’ve meandered a fair bit (I did warn you) but I’ll finish off this post by saying that many people won’t understand how complicated this will feel and you may have no desire for others to know until your kid is ready to share that part of themselves with the world. But I want you to know that I get it.

Till next time…