Insight finds out how Intersex people navigate life and the medical system.
JENNY BROCKIE: Welcome everybody, good to have you here tonight. Alex, you're 33, you were raised by your parents as a girl?
JENNY BROCKIE: What did you find out when you were 17?
ALEX: When I was 17 I was taken to my kidney doctor and he drew a really, really bad diagram of me and he explained that I was born with gonads that were removed. So some tissue that was removed that wasn't an ovary or teste and that happened when I was a baby and that I was born ambiguously so my genitalia was undetermined.
JENNY BROCKIE: You were 17 and this is the first you've ever heard of it?
ALEX: Yeah, and I thought all that time I was just a girl and then I was told that I was actually 46 X Y chromosomes.
JENNY BROCKIE: Which means, that's chromosomally male?
JENNY BROCKIE: Did you have any idea?
ALEX: No, as far as I was aware, I was just a normal girl, very tomboyish but, just a girl.
JENNY BROCKIE: And you had surgery to remove the gonads, did you have any other surgery as well?
ALEX: When I was about seven or eight they created a vagina for me. They did cosmetic surgery to make it look female.
JENNY BROCKIE: How was that explained to you when you had that surgery, do you remember?
ALEX: I was basically told that I was going to get tidied up downstairs and that was it.
JENNY BROCKIE: What was life like for you as a teenager?
ALEX: A bit weird because I wasn't developing like all my friends. So they were going out on dates and doing all sorts of things that teenagers tend to do and I was essentially still a kid.
JENNY BROCKIE: So you hadn't gone through puberty?
ALEX: No, no.
JENNY BROCKIE: Okay, and you were dealing with a lot of other physical issues as well, weren't you?
ALEX: Yeah. So I was, I had a kidney transplant when I was eleven and I also had to have a bladder made for me when I was about seven or eight.
JENNY BROCKIE: What had the doctors told your parents when you were born?
ALEX: Um, basically from what I've been told by my parents and especially my dad recently, is that the doctors just had not a clue what, what had happened to me and so they had to consult doctors around the world. They were trying to keep me alive from the kidney perspective but also they couldn't work out whether I was a boy or girl.
JENNY BROCKIE: How did you react once you found out about what had happened at 17?
ALEX: I went into a bit of a state of grieving because I thought I was someone and I wasn't.
JENNY BROCKIE: What do you mean?
ALEX: I, I thought that I was, I'll use my dead name, Catherine, and that was it and, and all of a sudden …
JENNY BROCKIE: And you didn't feel like Catherine anymore?
ALEX: I didn't know who I was. I had to try and work out my identity all over again.
JENNY BROCKIE: So what did you do to try to do that?
ALEX: Well, I turned to logic so I was told I was chromosomally male so I thought that the logic would be that I would just go on testosterone instead of oestrogen.
JENNY BROCKIE: What did your parents say to you about why they hadn't told you any of this?
ALEX: The first thing they told me that night at home was that they'd been dreading that day that I would find out.
JENNY BROCKIE: And how did you feel about that?
ALEX: Um, I was a little bit surprised. My parents were - obviously knew the whole time and they kept it a secret for that long period of time because they were told to keep it is a secret and for so for me to find out this new information they were probably very stressed out and just really unsure how to react.
JENNY BROCKIE: And how did you feel about them keeping that secret from you?
ALEX: Not very happy I was quite upset by that because I found out that I, 'cause during my time growing up I would be asked to leave the doctor's office and my parents would stay inside and talk to the doctor while I waited in the waiting room and that turned out to be them talking about my intersex status. That's what they were talking about and I had not a clue.
JENNY BROCKIE: How do you identify now?
ALEX: Now I identify as non-binary, partially on a practical perspective because I've had to go back onto oestrogen because testosterone was causing some medical issues, and so I don't know what's going to happen in the future, whether I go back onto testosterone or oestrogen. So I'm just aligning myself straight down the middle partially because I don't know what's going to happen in the future. I don't want to align - I don't want to reaffirm my identity one way or the other and then have to go backwards, if that makes sense.
JENNY BROCKIE: How do you feel about it?
ALEX: A bit of relief. For me it's been a very long journey because you know, I spent about twelve years trying to live as male and seventeen years trying to live as female and now I just feel comfort, comfortable in where I am now.
JENNY BROCKIE: Do you have any sense of why the doctors made that original decision to identify you as female?
ALEX: Um, because it was medically easier.
JENNY BROCKIE: What do you mean?
ALEX: It was easier to construct a vagina than to construct a penis.
JENNY BROCKIE: And how do you feel now about the decisions to go ahead with the surgery and hormone treatment?
ALEX: I'm not very unhappy.
JENNY BROCKIE: Bonnie, tell us about your situation biologically?
BONNIE: So I have X Y chromosomes. I have always been female, I was born female, present female and I'm an X Y female so I'm an intersex woman. So yeah, X Y chromosomes can also equal female.
JENNY BROCKIE: Okay, and what does it mean in terms of your body? You were born, you weren't born with ovaries, you were born with testes?
BONNIE: Yeah, undescended testes.
JENNY BROCKIE: Okay.
BONNIE: And like in my abdomen and that was, that was, I had a hernia when I was 18 months old and when the surgeon was actually repairing the hernia the surgeon noticed that I looked like I had testes and not ovaries, and apparently like the surgery went much longer than planned and they had a bit of an explore and at that point as well they, because my sister had also had a similar hernia, that's when they sort of put those two together and thought that we must have had CAIS.
JENNY BROCKIE: And part from the testes, are there other physical characteristics that you have or don't have that are related to being male or female?
BONNIE: I don't have a uterus so I don't menstruate and yeah, I have a very wonderful vagina, but I promised I would never talk about my vagina on television again.
JENNY BROCKIE: Well there you go.
JENNY BROCKIE: Alright, so you had surgery to fix the hernia when you were three months old and this was all discovered?
JENNY BROCKIE: At that point. Was your situation explained to you as a child?
BONNIE: So we lived in a regional centre and had to travel to the big smoke in order to see the big doctors so that happened quite a few times.
JENNY BROCKIE: Over what sort of ages?
BONNIE: Like from, like from, like being a toddler through to I was twelve, so I had surgery when I was twelve to remove the testes.
JENNY BROCKIE: And what do you remember of that, of that surgery?
BONNIE: It was pretty typical, like lots of people talking about me but not to me. Lots of kind of physical examinations, like whole rooms filled with student doctors and people inserting their fingers in me whilst talking to other people in the room.
JENNY BROCKIE: What was that like for you?
BONNIE: Decision making processes going on and then kind of some real kind of doctorly man explaining to me as a child.
JENNY BROCKIE: And what was that process like for you as an eleven or twelve year old?
BONNIE: Well I knew something was going on being, like we'd been to the doctors heaps of times. You know, like it was all leading up to that point so you know, it was show time.
JENNY BROCKIE: Had it been explained to you by your parents and by the doctors exactly what was going on?
BONNIE: No, not exactly what was going on. I remember the doctor telling me that there was a risk of cancer. I don't remember my parents particularly telling me that.
JENNY BROCKIE: If you didn't have the surgery?
BONNIE: If I didn't have the surgery.
JENNY BROCKIE: To remove the testes, the internal testes?
BONNIE: Yeah. So yeah, my mum decided to do that at duress really. She said that she wasn't really given very many other options, it was the only thing that was presented as the only option at that time and they weren't given any support, none of us were given any kind of counselling about it. It was really like this needs to happen.
JENNY BROCKIE: Your older sister Phoebe is here. Phoebe, you have the same condition, you also had the surgery. How old were you when you had it?
PHOEBE: I was seventeen years old when I had the gonadectomy.
JENNY BROCKIE: And how was it presented to you?
PHOEBE: Well I was a bit older so I'd finished grade 12 biology and my mum explained to me that I actually had 46 XY chromosomes and to me that was like oh, I'm a boy. That's the first thought that I had but I mean I feel I'm a girl, et cetera. But it was sort of made sense because I knew something was wrong because I hadn't menstruated and I didn't really go through quite the same puberty as the rest of my friends so, and I always felt different. So it sort of came in a way that was like a breath of fresh air because it was something about it being medical that I was like oh, well it must mean that there's other people like me and it's not just me, I'm not just an alien, like a one of a kind.
JENNY BROCKIE: But you had your sister?
PHOEBE: Well actually I never knew Bonnie had AIS as well until that time I was told. So in a sense I really felt like the only one and then it was lovely, but also a little bit strange when I was like oh, Bonnie has AIS as well? So, but that was how it was kept in our family, I suppose, like we didn't talk about it. My parents didn't talk about it and yeah, it was like a cone of silence, I suppose.
JENNY BROCKIE: What was the surgery like?
PHOEBE: It was, um, pretty confronting. I mean I was kind of excited about it because to my mind, it was going to fix me. I mean I was worried that I couldn't have sex because I thought I might not have a vagina that could accommodate, you know, like penetrative activity. But it was, so I was sort of excited that it might actually fix me but when I got there I felt like, like a piece of meat. I was kind of, yeah, like examined and photographed and talked about, not to, and I felt very…
JENNY BROCKIE: Talked about by doctors amongst themselves but not to you?
PHOEBE: That's right. And then I was sort of out in the real world and I then had to sort of work it out for myself from there.
JENNY BROCKIE: And what was that like?
PHOEBE: It was crazy. I, yeah, I'm not sure how well I coped because I must have been very depressed. Like I felt like I wanted to die. So yeah, but that's how I felt and it lasted for quite a long time and I sort of lost myself with, in other ways like with drugs, et cetera. So eventually I think probably the turning point for me was when I found out that I could find other people because the internet had been invented by then and so I could Google other people and then that was kind of a big turning point for me in my story.
JENNY BROCKIE: It's still unusual for people to talk about this though, isn't it?
PHOEBE: It's not discussed that often and, but the nice thing is when you meet other people, you realise how similar your story is to others and that is actually quite an assuring thing.
JENNY BROCKIE: You both had what's called vaginal dilation as well. Can you just tell us a little bit about what that involves and what it's like to go through?
PHOEBE: Well, a lot of women with CAIS do have like shortened vaginal canals.
BONNIE: Awesomely short.
PHOEBE: Well, they're pretty, anyway. So in a way we were prescribed these devices which were kind of progressively bigger and bigger so that you could put them in at night and then wear really tight pants and hold them in and that would stretch your vaginal canal out longer and longer, and they were pretty painful actually.
JENNY BROCKIE: And what reason were you given for that? What was the recommendation for why you should do that?
PHOEBE: I'm not sure if I ever knew what the recommendation was. I just knew so little about my own body and I sort of trusted what was the information that was given to me.
JENNY BROCKIE: And did anyone talk you through that? Like did you feel that anyone in the medical profession talked you through it in a way that helped to make it make sense?
BONNIE: I got mine by post. Like it was before the internet but it arrived in the mail from like the, from the big smoke and it was like what to do with this? It didn't have instructions, it wasn't IKEA, but like…
PHOEBE: I got a few kind of instructions and it sort of made some sense. You know, it was just like oh, you have a very short vaginal canal and this will help stretch it out.
JENNY BROCKIE: Are you both on any treatment now?
BONNIE: So like most people that have had their gonads removed will have to have a lifetime of hormone replacement therapy. So at the moment I take testosterone replacement therapy. I was like prescribed oestrogen which always kind of made me feel very not like I was in the wrong kind of body, like you know, I suffered terribly from depression, like body image complex, like eating disorders throughout my adolescence and early adulthood, and um, like taking oestrogen really didn't sit very well with me and so I actually stopped doing it. So consequently I now have like osteopenia which means I have really low bone density, I break my arms really easily if I kind fall over, when I'm dancing I can do that.
JENNY BROCKIE: Have you had side effects from taking the drugs?
PHOEBE: Um, yeah, I suppose, I mean I was on oestrogen for nearly twenty years and then now I'm taking testosterone because I feel like that was the hormone that my body was meant to have. Because I had testes when I was a teenager and they produced testosterone and I felt very psychologically secure on testosterone and I feel much better on testosterone now.
JENNY BROCKIE: Charlotte, you want to be anonymous to protect your teenage daughter who has an intersex variation. How was it discovered?
CHARLOTTE: It was discovered when she was nine years old. It was actually discovered that she had two testes in her body. Up until that point in time, we had thought, and she was a perfectly healthy girl.
JENNY BROCKIE: So you found this out?
JENNY BROCKIE: And you didn't act on that at the time?
CHARLOTTE: Initially we were told that she had Complete Androgen Insensitivity Syndrome, CAIS and that's what we believed for about three years.
JENNY BROCKIE: And what does that mean?
CHARLOTTE: That means that her body doesn't respond to androgens at all, so that she was born with testes instead of ovaries and she didn't have a uterus. However, then around twelve years of age she had just a couple of body changes that made me start to wonder and question that diagnosis.
JENNY BROCKIE: What sort of things?
CHARLOTTE: Well she started to develop pubic hair and with CAIS that's usually not the case. So we went and had some more testing and then it was actually, well we were told that she had 5 Alpha Reductase Deficiency or 5AID for short.
JENNY BROCKIE: And what does that mean?
CHARLOTTE: Yeah, what that means is that was another, another overwhelming experience to get our heads around was this different condition because that particular variation was a little bit more complex and what that meant was that instead of following down that female developmental path, her body would likely start to virilise with the onset of testosterone during puberty. So if she did nothing it would be likely that she'd virilise and start to masculinise.
So she and we, my husband and I were faced with the really difficult decision of what to do about that. There was pretty much three options. One was to do nothing at that time and use puberty blockers to prolong the decision making time. The other option was to let that development happen and that might mean that her body would start to masculinise. Then the third option was to have surgery to remove the testes, meaning she would be on oestrogen hormones for the rest of her life.
JENNY BROCKIE: And what were the medical specialists advising you to do?
CHARLOTTE: I don't think that they really had a grasp on the long term future. I mean it's a very individual situation and I sort of got the impression that it was very much case by case.
JENNY BROCKIE: Is what you're saying that you weren't getting, you know, clear direction?
JENNY BROCKIE: And it was left to you to kind of work out what you thought about those options?
CHARLOTTE: Yeah, we certainly weren't given clear direction because it was very much, well this is the situation and now we need to work out what the best thing is for your daughter. So thank goodness by that age she was old enough to understand what was happening.
JENNY BROCKIE: How old was she, thirteen?
CHARLOTTE: She was twelve. I had started to tell her about how her body was a little bit different from the age of ten so she already had some understanding of that. So when she was twelve and she was presented with this new information, she had just a little bit of thinking time and she decided that she liked her body the way it was and she wanted to continue down the female path so she chose to have her testes removed.
JENNY BROCKIE: And how confident were you that a twelve year old could make that call?
CHARLOTTE: Um, if I think into the future, not, not hugely confident. However, for her twelve year old brain and her twelve year old understanding of the situation, she knew what it involved and we had to honour her wishes because ultimately it's about her as an individual and how she felt about herself. So I would have supported her with whatever decision she made.
JENNY BROCKIE: Steph, you're 25, you had variation too. You don't want to talk about the details, was it discovered at birth?
STEPH: No, it was only discovered when I was nineteen. That's when I found out and that’s when my family found out when I first saw the doctor then.
JENNY BROCKIE: Okay, and what choices were you given medically?
STEPH: So I had quite a positive experience. When I saw the doctor I was just told that this is what I have, this is what I don't have, this is just how I am. But it was never framed as a problem or something that needed to be fixed. I was told that if I wanted I could have surgery or interventions, but that I was okay and that I was healthy and fine and so it was really just an option I could take if I wanted.
JENNY BROCKIE: And so there were no health ramifications of either, you know, not having the surgery, that were presented to you? It was just an option that you were given?
STEPH: That's correct.
JENNY BROCKIE: Yeah. You decided not to have surgery, why?
STEPH: I just chose to remain how I was because, you know, up until that point, nineteen, I was completely happy with my body and I think, you know, my body does everything that I want it to do and always has, so I'm very fortunate in that regard and therefore I never saw the need to change that. Knowing of course that this is something I could do in the future if I change my mind, but that is a choice that I can make if I see fit.
JENNY BROCKIE: If it had been discovered when you were a baby, or you know, when you were born, how would you feel about being operated on as an infant?
STEPH: I, I would have really hated that. I would have not been pleased at all because that would be someone making a decision about what they think my body should be and how they think I should be and certainly my experience has shown that that is not what I would have wanted.
JENNY BROCKIE: I asked the question because you know, a lot of people do discover this at birth and those options are given to parents and parents make decisions about what path they're going to do down. But in your case that wasn't what happened, you found out much later and I'm really interested in how you feel if it had been discovered early you know, what do you think?
STEPH: Yeah, yeah, no, absolutely, and I think it does very much depend on the variation, but I think that certainly I would have not, not liked someone to have made that choice for me. I think it's a choice that we all need to make for ourselves about how we want to be and what's done to us. I think the very idea that, that you would choose to change someone else's body already suggests to them that there's something wrong with that body and that's there's a problem that should be fixed. So for me, since that's never happened to me, my experience has always been very positive and people have always given me choice and I've always felt very comfortable in myself because of that.
JENNY BROCKIE: Jane, you're also here anonymously, you had surgery when you were an infant. Why?
JANE: I just had a slightly larger clitoris from birth. The operation was mostly done to reduce the size of the clitoris wall because I kept getting UTIs.
JENNY BROCKIE: So what do you think about the idea of operating on babies and infants within intersex variations?
JANE: Ah, like I think it should be an individual case. I don't think that there should be a broad spectrum of a rule where the child has to wait till twelve or has to wait till puberty. I think that should be dealt with individually. My case turned out fine. I have no repercussions, sex life is normal.
JENNY BROCKIE: And, your parents made that decision obviously, how do you feel about that decision?
JANE: Yeah, I feel good because I was always a girl, there was no – they weren’t changing any form of sexuality or you know, choosing between male or female, always a girl.
JENNY BROCKIE: Sonia, you're a gynaecologist.
JENNY BROCKIE: There are clearly many different situations that people finds themselves in and different conditions. How do you decide whether to recommend surgery on kids with intersex variations or not? What are your guiding principles that sit behind that?
SONIA: The decisions that were made thirty, forty, fifty years are quite different to the decisions that are made these days and we understand things much better now. So that we can, we try really hard to exactly define a condition because if we know exactly what the condition is, we can then say we know from the literature, from the world experience, from our own experience, that these people are likely to feel this gender or that gender. But as was just said, this is a very individual decision that needs to be done with the family and we're putting as much information as possible to the family.
The parents are going to be raising this child and they are the ones who are in the best position to judge - what is the community that this child is going to be raised in? And so their assessment of their child's needs is really important and so it's a, it's a discussion that involves a multi-disciplinary team, the surgeon, the paediatric surgeon isn't making that decision on their own. We have meetings where we have twenty people involved putting information in, but the family is critically important and we're trying to ensure that we're getting a balance between those things and trying to ensure that we get the best possible outcome for people.
JENNY BROCKIE: Can I get a response to that? Who'd like to response to that, Morgan?
MORGAN: Well I think it's quite clear that the gender that somebody will be when they grow up is unpredictable. So what we're doing, if there is this early surgery, is that we're not reducing the size of their clitoris, we're removing that phallus or their penis and that's a very challenging, it's a violation of their rights is the only way I can describe that.
JENNY BROCKIE: You're emphasising the rights of the child and Sonia, you're emphasising the parents being the people who make these decisions and therefore their sense of what is right is really important, right?
SONIA: The first question that parents are asked is – is it a girl or is it a boy? And so the dilemma of saying – I don’t know or we are not sure, is something that families have enormous problems with.
JENNY BROCKIE: What you are saying is that the parents are central here.
SONIA: I think there are some circumstances after lengthy discussion with family that it is appropriate to go ahead with surgery.
JENNY BROCKIE: Morgan, what do you disagree with the medical profession over in relation to this whole area?
MORGAN: The rights of the child, is the issue and the rights of the future adult to a sex life, to self-determination, to choice. There are some medical interventions that are medically necessary and those can include, in some small number of cases, a gonadectomy. In a small number of cases there might also be issues, urinary issues that I think have already been mentioned.
JENNY BROCKIE: So the removal of testes, gonadectomy?
JENNY BROCKIE: You think only in a small number of cases that that should be done?
MORGAN: Yeah, I think it should only be in a very small number of cases, usually it's possible to wait.
JENNY BROCKIE: You're saying the medical teams are getting involved in that beyond the, beyond the risks?
MORGAN: Yes, they're getting beyond the actual medical risks and into what are actually called psychosocial rationales for medical interventions.
JENNY BROCKIE: And you think those should not form part of a decision?
MORGAN: Yeah, I think they should not form part of the decision.
JENNY BROCKIE: What if the parents want them to form part of the decision?
MORGAN: I think there are situations where parents should not have the right to change the body of the child.
JENNY BROCKIE: Now you had surgery yourself in your 30s?
JENNY BROCKIE: What was the surgery?
MORGAN: I ended up with more than one surgery, I ended up having four surgeries in four months which was a really, the most difficult experience of my life.
JENNY BROCKIE: And can you tell us what the surgeries were, what they involved?
MORGAN: Yeah, there was a gonadectomy and mastectomy and then there were follow ups to both of those because now they're often, they have problems. I ended up with another diagnosis then of depression.
JENNY BROCKIE: So why was it the most difficult experience for you?
MORGAN: I wasn't psychologically prepared for the consequences of those surgeries. I wasn't prepared even for the physical consequences of the surgery. They changed who I was in ways that I actually wasn't prepared for or expecting.
JENNY BROCKIE: Do you think if that had happened when you were younger that it might not have been as traumatic because you'd established an identity for yourself as somebody as an adult?
MORGAN: This is true, but see, I think even as an adult, I don't feel like I was giving fully informed consent myself to the process that I went through.
JENNY BROCKIE: Because you weren't warned of how you might feel?
MORGAN: It felt like being on this runaway train - that a process had begun that I was not in control of.
JENNY BROCKIE: So how much has that experience of yours informed your activism over surgery on children?
MORGAN: Well I think…
JENNY BROCKIE: And your opposition to surgery on children?
MORGAN: I mean my opposition to surgery on children, it's not just my, let's be clear about this, it's not just me that's opposing that. It's also increasingly a range of clinician organisations including Physicians for Human Rights, including even the board of trustees of the American Medical Association.
JENNY BROCKIE: Sonia, your response to this? I mean do you, do you understand at all the arguments that Morgan's putting forward about the rights of the child versus the rights of the parents? That the parents shouldn't have that say?
SONIA: Absolutely. I think this is incredibly complex and I think this is a discussion that we have with families in-depth and it's not a simple yes, no, and we take each individual cease and are weighing up a multitude of things. Our dilemma lies in the small number who we are now operating on, which is a vastly reduced number to what was happening thirty, forty fifty years ago, and also remembering that the surgery and the outcomes here in Australia, we know that our outcomes are better than some of the other places around the world.
JENNY BROCKIE: What is the evidence of outcomes in general with early surgery compared to waiting?
SONIA: So no data about waiting and counting surgery is difficult because we can't even agree what conditions to put in under the umbrella of intersex or disorders of differences of sex development because not everyone has the conditions that are under this umbrella are happy to call themselves intersex. So if we can't agree on terminology, it's hard to count. But we've certainly done work out of Melbourne and we've got several studies now trying to look at long term outcomes and you know, the genital sensation, anatomical cosmetic outcomes.
JENNY BROCKIE: But is there any evidence that operating earlier has a better outcome than waiting?
SONIA: No, but all the experience, there is data about what has happened with early surgeries and there isn't data about what happens with delayed.
JENNY BROCKIE: So we don't know is the answer?
SONIA: No, we don't know the outcomes if we do late surgery.
JENNY BROCKIE: Okay, anyone want to buy in on this?
ALEX: Yeah, I'm a little bit frustrated from what Sonia said because I live by the philosophy of my body, my rules. I mean Sonia talked about the parents quite a bit and how it would work in a family situation, but at the end of the day I have to live with it. You know, other intersex people who've had the surgeries, whether they needed it, I mean if they need it it's fine but if they don't need it then they shouldn't have it because you are making a guess on someone's, what someone will identify later in life. You can't guess that.
JENNY BROCKIE: So what do you think should happen, Alex?
ALEX: I think the person, the person who has got ambiguous genitalia should be well informed later in life so they can make their own decision whether they want to have the surgery.
JENNY BROCKIE: What does everyone else think?
BONNIE: I'm not anti-surgery, I'm pro-choice when it comes down to it, and you know, like I don't, I don't doubt that there are sometimes when all of the ducks line up in a row and the surgery fits the person and their identity and how they want to use their genitals and what they want to do and that might work really well for that person but you can't guarantee it and if it doesn't work well, it works badly, really badly.
JENNY BROCKIE: So what do you think about the idea of surgery then on infants and children where the parents make a decision about what should be done?
BONNIE: Um, look, intersex issues are family issues, they're managed by family. They're managed by the culture within that family and, and if they don't, if it doesn't work then families fall to pieces. You know, like it's a lot of pressure put on parents in order to have to manage that scenario on a long term basis.
JENNY BROCKIE: Do you think parents should be able to make those decisions though, or not, about children?
BONNIE: I think every step you take away the power from the individual is, is terrible, actually, you know. Like the more autonomy the individual can have over their body and what happens to it, the more empowered they're going to feel to have positive language to talk about their body as they move forward.
JENNY BROCKIE: But do you acknowledge that there can be risks associated with waiting as well as risks associated with acting?
MORGAN: The stigma, the stigma and the bullying, that's the problem. It's not the bodies that people have - it's the stigma and the bullying that people experience that's the problem.
JENNY BROCKIE: What evidence is there around risk of not performing surgery in some situations, there's been mention of a cancer risk, for example, do we know what the cancer risk is leaving testes, internal testes in a baby or a child, Jacky, your response?
JACKY: we are discovering more about those risks and our understanding has actually changed with time as more information has come out, we have an idea, we have a better idea than we did in the past about which people are at high risk of cancer and which people are at a lower risk of cancer.
JENNY BROCKIE: And this is to do with having internal gonads?
JENNY BROCKIE: That's where the cancer risk is in terms of intersex variation?
JACKY: Yes, yes. So if a gonad, which is a testis or an ovary, didn't form completely, then in certain circumstances, particularly where there's a Y chromosome present, that gonad has a high risk of cancer.
JENNY BROCKIE: Zoe, you had surgery at fifteen. Were you warned there was a risk before you had surgery?
ZOE: Yeah, every other possible solution was looked at, studied. All doors were open, nothing was left in the dark.
JENNY BROCKIE: Now you have Turner Syndrome?
JENNY BROCKIE: What does that mean?
ZOE: Turner Syndrome is an endocrinological condition where my ovaries don't work. I have an added Y chromosome as well and a short stature and just an under developed body. So we can't go through puberty without medical help.
JENNY BROCKIE: Okay, and what sort of help did you have?
ZOE: Well I was put on oestrogen tablets, I've had my ovaries all, as Jacky was saying, gonads removed.
JENNY BROCKIE: Okay, so what was the risk for you? Why did you have to have that done?
ZOE: Well, like mentioned the high risk of cancer.
JENNY BROCKIE: And how much say did you feel you had in those decisions?
ZOE: Well, in my instance I was at every doctor's appointment, I always had my say. If doctors didn't believe I understood something, they made sure that it was clarified.
JENNY BROCKIE: So what do you think about this debate around, you know, whether, whether infants and children should be operated on?
ZOE: Well, in my opinion, it's case by case.
JENNY BROCKIE: Peter, thanks for joining us from Canberra. You had surgery when you were three. What for?
PETER: Well I was born with a grade 3 hypospadias with associated Cryptorchidism which basically means that my urethral opening was between the kind of like the fold between the base of the penis and the testicles. So my penis didn't really have any actual function, it was more like an ornament in some regards, and I had that corrected, as you said, when I was about three.
JENNY BROCKIE: So what sort of surgery did you have?
PETER: I had a two stage reconstruction which was basically the first one was to basically just break down the penis and rebuild it from scratch, and the second stage was to pretty much clean up and just, you know, just iron out all the rough edges to make sure that it was functioning and working and looking like a proper penis. The Cryptorchidism, they cut into my pelvis and they manually force down my testicles.
JENNY BROCKIE: So in terms of your chromosomal situation, there was no kind of confusion about your chromosomal make-up?
PETER: Well, it kind of got lost in translation that I was in fact intersex. I only really found out I think maybe last year. So I haven't actually had a lot of the tests, I haven't got around to having a lot of the tests to find out just how far the rabbit hole actually goes. But my GP said, Peter Gasling, you are intersex.
JENNY BROCKIE: And how much of the surgery that you had as a child was medically necessary in terms of, you know, the functioning of your body and how much was it for appearance or for, you know, other reasons?
PETER: As soon as I was born they said right, your son is going to be at greater risk of getting urinary tract infections, kidney infections because of that Hypospadias, because it is not in the correct area. Regarding the Cryptorchidism, you will, you know, your son will be at a higher risk of getting testicular cancer later in life and it's better to do it now rather than leave it.
JENNY BROCKIE: And so what do you think about your parents making a decision to give you surgery in your circumstances?
PETER: Oh, look, I fully support it. I'm of the belief that if it's not broken, don't fix it regardless of the appearance. But I am of the belief that there are some conditions out there that do warrant a very quick solution, a medical solution.
JENNY BROCKIE: And what has all that meant for your sexual function?
PETER: Well, look it was pretty touch and go up until I hit puberty because they said we're not, it's still a mixed bag of tricks and what's going to happen when, when we hit that little bridge, but for the most part it, there was, it started pretty well.
JENNY BROCKIE: What do we know about sexual function in relation to these operations that are conducted, particularly on young children and infants?
SONIA: The works that's been done in boys suggests that if you do you Hypospadias repair when they're younger that they have a more positive body image and self-confidence and therefore their capacity, and the age at which they start sexual relationships, is more likely appears if you leave the surgery till later, then they are delayed in their sexual relationship development. But the studies suggest that function is - sexual function is fine. The information on girls is a bit more complicated because there are so many different conditions.
JENNY BROCKIE: Louise, you have a nine year old daughter. Tell us what you discovered when she was born?
LOUISE: She was born with ambiguous genitalia, so we were unable to let friends and family know if we had had a boy or a girl. After, I think it was about 48 ours we had the result back that she had Congenital Adrenal Hyperplasia.
JENNY BROCKIE: What does that mean?
LOUISE: So she cannot produce two vital hormones. The hormone cortisol, it's an essential, as is aldosterone, for the body to function and survive.
JENNY BROCKIE: How did you react as a parent to being told what you were told?
LOUISE: I guess it was, it was a shock for my husband and I, it wasn't something we were expecting, it was a condition that we had never heard of. Unfortunately as a result of that over production of, under production of those hormones, she was virilised.
JENNY BROCKIE: So she was virilised meaning, just what people understand what that means?
LOUISE: So the…
JENNY BROCKIE: What's goes it mean physically?
LOUISE: The female external genitalia was virilised, meaning that the over introduction of androgens increased the size of the clitoris, the labia become fused and the vaginal, what would be the vagina starts to turn into a connection to a penis.
JENNY BROCKIE: Right. So what were you, what were you faced with in terms of decisions that you had to make?
LOUISE: We were given the option of surgery for her. My husband and I took her home and…
JENNY BROCKIE: Now the option of surgery meaning was it absolutely necessary medically and in terms of her, her, you know, health, or was it optional?
LOUISE: Yeah, because she's female, she would develop normally as a female into puberty, and that if the surgery wasn't performed then she wouldn't be able to menstruate normally. She wouldn't be able to you know, if she decided to go into a relationship where she wanted to have children, then that would be obviously very compromised.
JENNY BROCKIE: Right, so what did you decide and how quickly?
LOUISE: It wasn't a quick decision at all. We, um, we of course did our own research, I got in touch with our support group. I spoke to many other parents and children who had children with CAH and also parents of children who had grown as women and had matured and had had surgery at a young age. And the decision that my husband and I made was that this was something that we would go ahead with.
JENNY BROCKIE: You'd go ahead with the surgery?
JENNY BROCKIE: Now you went ahead with that which was surgery to reduce the size of your daughter's clitoris?
LOUISE: A clitoral reduction, a labiaplasty so the labia were unfused, and she had a vagina formed as well.
JENNY BROCKIE: And that was when she was three months old?
LOUISE: That's right.
JENNY BROCKIE: And what was the main reason behind you deciding to do that?
LOUISE: We believed that we conceived a girl and we believed that the issue was the adrenal insufficiency and the secondary effect of that was the change on her genitalia. So our understanding and feeling for her was that we could manage the hormones, replacement therapy for those hormones she doesn't produce, and we would correct what that had subsequently caused.
JENNY BROCKIE: And how do you feel about that decision that you took?
LOUISE: We feel very strongly that we have made the right decision.
JENNY BROCKIE: Morgan, is that the type of surgery that you would like to see banned on babies and children?
MORGAN: Personally I think that what's being proposed there is a kind of medical intervention that I think should not be performed on a young child.
JENNY BROCKIE: Why?
MORGAN: Why? Because what's really been described is, is for appearance. I mean if there is actually a genuine UTI issue that is persistent, I can't put it in any other way, then that might provide a rationale for surgery. But otherwise, we should be waiting to see, waiting for the child to grow older and be able to describe for themselves what their identity will be, what they desire for themselves.
JENNY BROCKIE: Louise, can I just get your response to that?
LOUISE: In our minds we don't have an identity issue with our daughter. She was conceived as X, it's only an enzyme deficiency that has created this problem. So we don't have any, and this is very much a feeling of a lot of families who've been through this decision making process that we give birth to girls and those girls and the outcomes, as Sonia has mentioned, for CAH women are very favourable and our experience also with the medical profession has been outstanding.
JENNY BROCKIE: So how do you feel about the idea, what do you think about the idea of a ban on surgery on, on, you know, infants and children in situations where it's not, you know, a pressing medical situation?
LOUISE: I think it is clear tonight that every situation is extremely personal. It's extremely difficult and that everybody makes the decision in their hearts for what they think is going to be the best outcome for their children and I would hope that evidence will continue to gather to show that, and that we can't, my opinion is we can't ban it because it is the benefit of some children to have surgery as infants.
JENNY BROCKIE: Ed, you're from the Human Rights Commission and you're looking into this whole area.
JENNY BROCKIE: Is it an area where a ban could be either appropriate or inappropriate though?
ED: Well the touchstone in human rights and the United Nations has spoken about this as recently as this year, two things. The first is giving each individual the maximum amount of autonomy and the second is medical necessity. If you, if you adhere to those two principles, then you are much more likely to make good decisions and decisions that over time, individuals and their families will be satisfied with.
Parents are also in a position of enormous vulnerability when their children, very, very young children, may be presented with an intersex variation. They need the best possible information and evidence to be put to them because they're going to rely on that. And they can only deliver that if they're well informed and if they are able to support their child as well to make a good decision.
JENNY BROCKIE: When will the Human Rights Commission be making a decision about this?
ED: So we'll be gathering evidence over the course of the next year and we'll make recommendations in 2018.
JENNY BROCKIE: Charlotte, what do you think about this because when I asked you about whether your decision was optional, you said it was?
CHARLOTTE: My personal view is that unless there's some medical health need for surgery on infants, then parents and families should be supported to help raise that child in a loving, caring, accepting environment so that they are able to build their self-esteem and be proud of their body and make a decision when they're old enough and they understand about their body.
JENNY BROCKIE: So would you support a ban on the kind of surgery that you went ahead with, that your daughter went ahead with, or would you not?
CHARLOTTE: Well my daughter actually made the decision and that was an immense relief for me because as a parent, before that decision was made, I did feel incredible pressure at the thought of having to make a decision of that capacity.
JENNY BROCKIE: Magnitude. OK. Can I get some other responses from people about this, Shubha?
SHUBHA: I think the issue about a ban means that people will find ways around it because when you've got such a wide variety of conditions, you can't have a one-size-fits-all approach to management and so something like a ban means that people will look to alternative solutions, one would be that people could travel overseas to a country where that surgery would be performed for them.
JENNY BROCKIE: How would you have felt if you hadn't had that capacity to make that call, just as a parent? Charlotte?
CHARLOTTE: I would have felt OK because I would never have consented to surgery on my daughter without her knowing what was happening.
JENNY BROCKIE: Louise, how would you feel if the idea of a ban actually got traction?
LOUISE: I think I would feel some disappointment for future females born with CAH because I do know that surgery at a young age is very atraumatic, it is something that is not remembered. It is something that is corrected at such a young age that they can then go on to live a very wonderful fulfilled life as a woman and that - so I would feel very disappointed for those women who would have to wait until the age of consent to have to make that decision.
JENNY BROCKIE: Thank you very much everybody for joining us tonight and for sharing your stories, really appreciate it very much indeed and that is all we have time for here but let's keep talking for here but let's keep talking on Twitter and on Facebook. Thanks everyone, thank you, well done.