When Sophie Ottaway was a teenager she often had to go to the doctor in Beverley, near Hull, where she grew up. She knew that she had been born with medical complications, that her ovaries were damaged and had been removed, and from the age of 11 she had to take hormones. But when she was 22, she went for a routine appointment for tonsillitis. Sophie hated medical appointments, so her mother always liked to accompany her on visits to the doctor. On this occasion her regular GP was on holiday and she saw a locum.
The locum’s computer screen was directly in Sophie’s eyeline and on it were her medical notes. ‘Sophie Ottaway,’ it began. ‘46XY chromosome. Prolapsed bowels through abdominal defect – bladder reconstruction, testes and phallus removed, vaginal construction…’
She had been born a boy. ‘It was on the screen in bold font,’ says Sophie, who is the type of person who notices things like font detail. ‘I could read it from where I was sitting. And I looked at Mum and saw that she had clocked it, and then she clocked that I’d seen it. I never wanted to cause a scene in those days so I didn’t say anything, and mum didn’t say anything – and we finished the consultation, I got my antibiotics and left.
‘But then I hit the roof.
‘Mum had a white Nissan Micra – I don’t know why I remember that – and I got in the car and I just f—king exploded. I remember coming home, going to the fridge and cracking open a bottle of beer, going into my room and slamming the door and Mum coming up and trying to talk to me and I was just shouting at her: “I don’t want to talk to you! I don’t want to know! F—k off!”’
Sophie didn’t tell anyone what she had discovered for another 15 years.
Sophie is 37 now. I am sitting with her and her mum and dad in the conservatory of her parents’ neat and spotless home in Beverley, a small market town full of lovely run-down architecture and hideous new buildings. Sophie is lively, warm, passionate and funny; clearly reconciled with and very close to her parents, Karen and John, who seem devoted to her.
Sophie is keen to tell her story. ‘It’s been a very difficult journey for us. There’s been times when we’ve hated the world and hated each other, but we love each
Sophie was born with a rare condition called cloacal bladder exstrophy – although her parents were not even told the name of it until 2019. She was a much wanted child and her mother had a ‘textbook pregnancy’, including a routine scan at 16 weeks, which reassured her that all was normal. At the time John was a computer analyst and Karen a personal assistant to the director of a food-production company. They worked in Wythenshawe.
Sophie was born at 5.45am on 20 March 1986. She weighed just under 6lb. Karen was exhausted, having not slept for 48 hours. ‘They took the baby away immediately,’ says Karen, ‘and there were no happy smiley faces – the midwife was in tears. John came over looking quite distressed. He said, “We’ve had a boy but he’s got a lot of problems.”’
John, sitting in the corner of the conservatory, starts crying quietly. ‘Oh please don’t get upset,’ says Karen. And to me she says, ‘He’s had a few strokes and he gets very emotional.’
Karen and the baby were moved to Saint Mary’s Hospital in Manchester in an ambulance and Sophie was placed in the neonatal surgery ward, but they didn’t see her.
Cloacal bladder exstrophy is a condition that affects about one in 200,000 – 400,000 live births, and develops while the baby is in the womb. ‘Her bladder was in two halves and on the outside of her body, along with part of her intestines and there was a very small split penis.’
The doctors indicated that she would just grow up thinking she was a girl’
Karen and John were told that the condition would require many hospitalisations and operations; it would cause infections and other problems, and the child would miss a lot of schooling, and have erectile dysfunction when he got older. ‘There would be a lot of psychological problems too,’ says Karen, ‘they were painting a really black picture. Bear in mind that we didn’t have the internet in 1986, you couldn’t just google it, and they didn’t even tell us the name of the condition.
‘We were in the room with these two surgeons, who seemed to know what they were talking about; they said that if they changed the child’s gender to female, the outcome would be better. We’d never heard of anything like that, but they said they’d done it before. There would be less infections, less hospitalisations; it would be a bit rocky at first but she would have a more normal childhood. After the initial operations she’d have a healthy chance of a great future.’
They were told to think about it but not to take too long – the birth hadn’t been registered and once the birth certificate was issued, the gender couldn’t be changed. They wanted to operate the following day.
This wasn’t made clear to the Ottaways, but it appeared that the doctors were subscribing to a theory that gender was learned, not innate. That if the baby was brought up as a girl, who would know the difference? She would not be able to have children, but could take hormones to ensure she had female physical characteristics.
‘Nothing was mentioned to us about nature or nurture, but the doctors said you were a really pretty baby and as long as we didn’t tell anyone, then nobody would ever have any cause to question her gender,’ says Karen. ‘They indicated that she would just grow up thinking she was a girl.
‘John and I didn’t even need to discuss it. We said, in the light of what you’ve told us, it will be better for the child to have that operation.’
‘The consultant said, “Don’t tell anybody… because someone will blab and if it leaks out it’s going to affect Sophie”’
Karen has always kept a diary every day. So although the hospital doesn’t have any records of Sophie’s birth and the early operations (the family were told that records are destroyed after 20 years), she does. Two days after birth, their baby had 10 and a half hours of surgery.
‘We were told they’d ring after the surgery,’ says Karen. We were waiting and waiting, and I said to John, “When that phone rings, I can’t answer it. She may be dead.”’
But despite her size, Sophie came through the operation very well. ‘And we went to see her and we were amazed that what had looked like it could have been a nightmare was so neat – a scar with a tube on either side, and where her urethra had been created, there was just a tiny plastic splint to keep it open. And that was how we brought her home, four weeks later.’
In simple terms, Sophie had had her male genital organs removed, a vaginal reconstruction and her anus, bladder and urethra repaired, and everything put back in place. John remembers the consultant saying, ‘Don’t tell anybody. Not even your family – because someone will blab and if it leaks out it’s going to affect Sophie.’
‘But from that point on they never gave us any guidance about what we should do,’ he says.
They were told not to tell Sophie about it either. There was no suggestion of psychological support for anyone in the family.
Instead, the Ottaways told friends and family that they had a little girl, but she had a few medical problems so they couldn’t come home immediately. The hospital in Manchester was more than 100 miles away from their families, so nobody had visited them there.
During the next 15 months, Sophie had five further operations. (The consent form they signed was to repair the bladder and the bowel and ‘anything else deemed necessary’.) The only practical support given was a single visit from a stoma nurse, when Sophie temporarily had to have a ileostomy bag. She still has only one fifth of her large intestine, and to this day is bladder incontinent (something her parents were not warned about) and has to wear pads, as she did throughout her childhood. Only recently was it suggested she could have a urostomy (creating a stoma for the urinary system).
She was a pretty baby, but when he pushed her about in the pram, John remembers that if people asked him, ‘Is it a boy or a girl?’ – as they often do – ‘It felt like we’d been rumbled.’ But once her hair grew, no one ever asked that again.
Sophie was a happy child, her parents say, until she was about 12. When she was 11, she started going to the doctor to get hormones. ‘I was told that I wouldn’t have periods because my ovaries were removed because they were damaged at birth, and that because I didn’t have ovaries I needed to replace the oestrogen with a pill.
‘I had to go and see the doctor every six months,’ says Sophie. ‘I hated it and in my teenage years I refused to go because I thought the doctor was a pervert. I’d go to the hospital and there was this f—king weird old man. He wasn’t actually a pervert, of course, but he’d touch my breasts and look at my bits to check I was on the right amount of hormones – essentially they were monitoring the gender reassignment to make sure it was going the right way.’
At what point were you going to tell her? I ask her mother.
‘As a parent I was looking for the right time and opportunity,’ says Karen. ‘I was hoping that at some point she would ask a question – and I wouldn’t lie to her if it had come up. “Why is this like this?” “Why am I attracted to women?” But it never came up. Never.
‘There was no literature, no guidance. We agreed that if she asked the question, we would tell her the truth – like when she found out that the tooth fairy wasn’t real, or Father Christmas…’
‘It’s a little bit different to that!’ explodes Sophie, laughing. ‘I mean, come on! “Santa’s not real and by the way you were born with a dick.”’
‘She was the happiest kid,’ remembers her father, ‘then when she got older, something started to change. She started smoking, and all sorts.’ It was worse than that. ‘We had every sort of abuse,’ adds her mother. ‘Drugs, self-harming.’
‘I went from being happy into this sort of dark slipknot,’ remembers Sophie.
Until she started taking hormones, she was an androgynous-looking child. Without testes, she had no testosterone, but until she started on the hormones, no oestrogen either. She was not attracted to boys. ‘I never understood it when girls would say, “Oh, do you fancy him over there? He’s hot, isn’t he!” And I would think, is he?’
Then, when she was 22, came the visit to the locum doctor when she found out the truth.
Her instant reaction was fury. ‘But it also answered loads of questions for me,’ she says. ‘Holy s—t, that explains everything – the pills, the hormones, the pervert doctor, why I like the girls at school and not the boys. But I went down some bad paths after that. I was young, and I couldn’t process so much pain – the only way I could deal with it was to shelve the problem. You don’t open that box. I thought, maybe sometime in the future I can open it but in the meantime I didn’t speak about it to any of my friends, I didn’t speak about it to my parents, I just cracked on.’
Sophie drank heavily. She developed a cocaine habit. She went to Hull University to study business and marketing, graduated in 2009 and was working in tech, doing user experience design, or UX, for Government services. She worked on different contracts, via an agency, for businesses such as HMRC or Defra, and was travelling a lot, ‘staying in cheap hotels, earning a s—tload of money and spending it all on drugs and drink.
‘Alcohol was a constant companion since I was about 16 or 17 but when I got a contract in London with HMRC I just had a pocketful of money and a lot of people around me with good access to cocaine – so I had about four to five years of heavy cocaine use. I was behaving like an absolute cock – but deep within was this person who just wanted to be accepted. I felt inadequate because of all the health problems, but I was pretty good at making money. I thought, well I might not be able to have a baby but I can buy myself a Mercedes and a big house. I built up a nest egg but there came a point where money meant jack s—t.
‘Was I happy? No. I was living in Travelodges five nights a week, eating McDonald’s for breakfast every day, drinking too much and doing drugs and staring at a computer screen, bored out of my mind.’
At the end of 2019, Sophie was at rock bottom. Lockdown intervened – and temptation was further away – the pubs were shut, the Travelodges were closed, and Sophie was working from home. Then a friend of hers had a very frightening experience with cocaine and Sophie had to take him to hospital. It scared her badly. Her mother poured away bottles of spirits and searched her house for coke, and, finding it in the TV remote control, marched off to the doctor’s with it. ‘I said, “Can I give you this?” His face was a picture! He told me to take it home and put it down the toilet.’
Sophie cleaned up. But at Christmas 2021 she became very ill and was admitted to Hull Royal Infirmary with sepsis. She had ‘disengaged’ from the NHS, she says, but had no choice then except to talk to the physicians about what happened to her.
At first the doctor didn’t believe her and thought she was ‘a nutter’. He even asked who her carer was. But after viewing her MRI and CT scans and looking at her records they realised she was telling the truth. And the scans showed what was a 25cm mass inside her.
‘They did not know what it was. But they didn’t think it was cancerous as there were no indications that my blood was fighting cancer. On Christmas Eve 2021, the consultant and 10 other clinicians sat round my bed and said, “We honestly don’t know what this is – it could be a failed pseudo vagina or it could be a testicle – we need further tests.” I just erupted in laughter.
‘At this point, it was a living nightmare and just too embarrassing so I decided I wanted out of the hospital.’ So they pumped her full of intravenous antibiotics, which got rid of the sepsis, and she left.
‘A few weeks later the consultants at Hull suggested a procedure they wanted to undertake to try and drain the mass via the rectum, but another surgeon was dead against this. After all of the lies that had been fed to me by the NHS, coupled with everybody’s inability to understand my anatomy – which they had created – I decided the safest option was to walk away from what I now call the National Homicide Service. That was the best decision of my entire life.’
But that experience was a trigger. Sophie tracked down her original surgeon, who had operated on her at birth, whom she doesn’t want to name. She decided to try to unpick the whole story. ‘Something clicked in me – it was like opening Pandora’s box. I thought, “You’ve not been looked after properly and if you want to survive emotionally, you’d better start talking.” And at that point the floodgates opened and I started talking, and it became normalised – and in doing so, the pain has gone. I’ve worked through it.’
The day she came out of hospital Sophie told a couple of close friends, and her aunt. ‘I was on my own a lot and had time to think, and I started feeling myself going down paths that I’d gone down in my 20s – dwelling on dark thoughts, and trying to attribute blame,’ she says. ‘And I realised I needed to break this cycle and bring people on board.’
One night, she’d had a lot to drink and put something on Facebook. ‘It was a horrible post, but I had this pain and I needed to dump it somewhere – and it was like an open letter to the surgeon: how could you f—king do this to me?
‘I’ve got my medical records and now I’ve read it all…’ the post said. ‘You said I couldn’t have kids and you told me just to deal with it… was that because you also surgically removed my perfectly healthy testes when I was just three days old in your bats—t gender reassignment?
‘I will fight this s—t for me and the other people this happened to who are silently dealing with the consequences of your ’80s medical experiments… Before anyone asks, I drank for the first time in a year. But above are the truest words I’ve ever written in my 35 years’ existence. These last few months have been a living hell. I’d be lying if I told you I don’t think of suicide every day.
‘I love you all Facebookers. Take time to digest and remember I’m the same person you knew… the same heart, same values just apparently different chromosomes.’
Now, Sophie says, ‘I’ve been on such a journey since then. And I truly understand the position my mum and dad were put in. They’ve been on an equally difficult journey but from a different perspective. I grew to understand all of these perspectives and eventually I ended up meeting my surgeon and having time to reflect on it all.
‘It wasn’t a nasty conversation, when we met, but essentially there had been a series of email exchanges where I was knocking on his door with my pain – and I didn’t like who I was becoming. I was putting my pain on to a man who was most likely following a medical pathway as a young surgeon, and later realising he had made a mistake and feeling bad for it – but instead I was thinking, “How could you do this to me? Why did you leave me this way?”
‘I didn’t swear at him – I even bought the bloke a coffee.’
‘I’m surprised he accepted it,’ says Karen, drily. ‘He might have thought you were trying to poison him.’
‘He said that he’d changed his opinion in later life,’ says John. ‘And he’s tried to drive change but the industry is a very egotistical one and it’s hard to change. He said that he firmly believed that he could have done nothing else at the time.’
While she was recovering from sepsis, Sophie watched a lot of Netflix, and she came across the documentary Three Identical Strangers, about three triplet brothers who were adopted by separate families, and somehow reunited. Sophie tracked down its producer, Becky Read, because she thought she might be interested in hearing her story.
‘She sent me a message via LinkedIn,’ says Read. ‘We had a chat and I was just blown away, by her story but also her as a person –her sense of humour, and clarity about why this mattered and her drive to help other people.
‘On a human level it’s layered and rich and touches on so many themes I’m attracted to as a filmmaker – the medical ethics and family decisions that had to be made, the role of the doctors in cases like this and the moral complexity – and the idea of, what would you do in that situation?’
Read is now making the documentary to be produced by Ventureland, which will come out at the end of next year. She has been collaborating with Sophie, who is very keen to track down – and ultimately offer help to – other people who have been the victim of gender reassignment as a result of medical complications.
A few years ago, Read had been looking into making a documentary about David Reimer, a Canadian born in 1965 who was one of identical twin boys, but had gender reassignment after a botched circumcision and became Brenda.
This controversial operation was done at the behest of John Money, an American psychologist and professor at Johns Hopkins University in Baltimore, who oversaw the case and involved Reimer in his experiment to prove the theory – which he avidly subscribed to – that gender is not innate but learned. But contrary to how he promoted it, and held it up as a success story, the experiment failed. Money subjected Brenda/David and his twin brother Brian to ‘childhood sexual rehearsal play’ which both found distressing. Reimer found out in early adolescence that he had been born a boy, and by the time he was 15, he underwent treatment to physically reverse the reassignment. He went public with his story in order to prevent similar misguided medical practices: there is a book about him by John Colapinto, and two documentaries, and in 2000 he appeared on Oprah.
Brian died of a drug overdose at the age of 36. Two years later, Reimer – suffering from severe depression – shot himself in the head.
John Money is dead now. In the course of her research, Read spoke to a neurologist who worked at Johns Hopkins and now works in psychiatric care. ‘He estimated that about 15,000 people worldwide over a 25- to 30-year period have had gender reassignment surgery – for cloacal bladder exstrophy and other conditions,’ she says.
Did Sophie’s surgeon subscribe to Money’s views? ‘I don’t think so,’ says Read. ‘From what I understand, he was a junior consultant and wouldn’t/couldn’t go up against a senior consultant.’ She thinks it’s more likely that, in the case of Reimer, it was a calculated experiment, whereas with Sophie, it was just misguided, but with good intentions. ‘Medical science – and what’s considered best at the time – is constantly evolving and changing. Surgery is much more advanced than it was in the ’80s, and nowadays you would have a multidisciplinary team around with such a complicated case, not just one doctor making the decision.’
But ultimately, says Read, it comes down to the inevitable fact that ‘this involved removing someone’s right to reproduce. Sophie is an only child, and the doctors removed what would have been healthy testes. Sophie is now a young adult thinking about having a family and she can’t. The choice was not hers. This was the decision made for this family by doctors, based on a deeply flawed idea.’
Did Sophie ever think about transitioning back to male?
She is unequivocal in her response. ‘There has never ever been one moment in time where I would entertain the idea of changing back,’ she says. ‘And there are two reasons. The first is that I’ve already been a customer of the NHS’s gender reassignment services, and would I be a repeat customer? F—k no. My inner Trust Pilot is saying “zero stars”.
‘The other thing is that as I went on this journey of trying to understand who I am and where I fit into society’s boxes – gender and race and everything else that wants to divide all of us from each other – I’ve realised that it’s my head that’s interacting, and whether I’m happy or sad is dependent on how I feel about myself. My self-worth and self-confidence have absolutely nothing to do with this skin and shell that I’m in now.
‘So if I’m in a place of pain, it makes no difference if they give me bollocks and a dick because I’m still in a place of pain – and I think, well if I go and put on another suit, would it resolve my pain? No, because I’m still not fully a boy, or fully a girl. So then you have to say, well what am I? I’m a soul, just navigating through this life.’
Sophie treated the ‘mass’ inside her with oxygen therapy, which she is convinced has worked, as she can no longer feel it or suffers from any symptoms. She came off the hormones a few years ago, after suffering from side effects. ‘I had bladder pain, discomfort, regular UTIs, emotional mood swings, weight gain issues. And when I decided to stop taking the hormones, I went from thinking, “Well I’m probably attracted to girls but I’m not that bothered either way, I just want someone I can talk to,” to thinking, “I definitely like women and I definitely want a girlfriend.” There was a marked shift – once you stop pumping in that female hormone – your body regulates back to its standard.’
She is philosophical about what has happened to her. ‘I might never know the why and wherefore of what happened – whether it was a pathway that was based on the fake success [of the Reimer experiment] – or just absolute incompetence and arrogance, or something wider. I don’t have those answers and I may never get them. But potentially through the process of making the documentary we might come to some conclusions. Just exploring different things and trying to analyse who did what and where it all came from – that process itself has been incredibly cathartic. And I’m a firm believer that we can’t change the past but we can definitely change the future.’
A few days after our interview, I got an email from Sophie: ‘As I reflected on our conversations, there was a quite major point that I am not sure I conveyed. In many ways, I have started to feel grateful for the journey I’ve been on. When I look back, it is the challenges that I have faced that have shaped me into who I am today. The process of trying to make sense of what happened to me led me to understand other people’s choices and try to put myself into the shoes of others. I guess it has also led to me developing empathy and realising that not everything or everyone is good and bad. There is darkness and light in all of us and the pathway to happiness and perhaps enlightenment is to feed darkness with light.’
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