For generations, children with male and female characteristics have been assigned a gender at birth. Is there an alternative? Parents, doctors and intersex adults share their experiences
When Juliet Swire gave birth to her third son in February 2014, doctors told her not to tell anyone hed been born. She didnt announce Jacks arrival for weeks not even to close family and friends.
Jack was born with both male and female anatomy, with ovarian and testicular tissue, and genitals that could belong to either a boy or a girl. He has one of at least 40 congenital variations, known collectively as disorders of sexual development (DSD), or intersex traits. It was months before Juliet and her husband, Will, were told Jacks specific diagnosis, of mixed gonadal dysgenesis. While they waited, all his parents knew was that Jacks sex couldnt be determined at birth, and that their doctors needed time to assign it.
One of the beautiful parts of having a baby is being able to share the joy that this tiny, newborn person has entered the world, Juliet says. We could have announced that our baby had been born with complications that mean we dont know if hes a boy or a girl. But the doctors took that away from us without any explanation. By encouraging them to keep Jack a secret, the doctors made them feel there was something shameful about his condition, she says. It set the precedent for how other people were going to perceive it.
Jacks specific diagnosis is rare, but being born with a blend of female and male characteristics is surprisingly common: worldwide, up to 1.7% of people have intersex traits, roughly the same proportion of the population who have red hair, according to the Office of the United Nations High Commissioner for Human Rights. The British charity DSD Families estimates that around 130 babies born in this country each year need investigations before their sex is assigned. Other people may have problems with their hormones that arent visible at birth.
Jacks parents knew he was different before he was born, when a routine scan couldnt determine if he was a boy or a girl. Juliet was referred to a consultant at the local hospital, followed by meetings with geneticists and neonatologists, blood tests and an amniocentesis. She was told her baby was genetically male, but that this didnt necessarily make him a boy. It was very hard. Id just assumed that XX is girl and XY is boy, Juliet says. Because people dont know there are variations, when they occur its a freakish thing. But actually, he is just a normal child.
Bouncing around the living room of their home in the West Midlands, Jack looks completely ordinary. With mousy, curly hair, a runny nose and a toothy smile, he clambers over Juliet and chucks a green football at me, oblivious to what his mother is telling me.
My entire pregnancy, Id worried that I wasnt going to be able to love my baby because it wasnt a he and it wasnt a she, she recalls. But when Jack was born, he was blue and floppy. Although it was awful at the time, it was the best thing that could have happened: I would have done anything to have made sure he was breathing again. Her eyes fill with tears. Quite quickly, he was crying. The relief was unbelievable. He was a baby and he needed feeding. Making sure that he was cared for was my priority, not poking around in his nappy.
Then someone from Bounty (a baby merchandising company whose sales reps, controversially, are allowed on maternity wards to collect mothers details for marketing purposes and to sell photographs) paid her a visit when Jack was a day old; Will had just gone home to rest. She told Juliet she was there to take pictures of the baby: was it a boy or a girl? We had no idea. Because I was tired and emotional, I just said, Oh, hes a boy. She then got a blue blanket and a blue teddy and a label that said Im a boy, and put it on him to take photographs. She never even asked permission to be there. When she left, it was the biggest meltdown Id had yet.
The Swires say they still feel let down by the team who were supposed to be looking after them not just the photographs, but being advised by doctors not to announce Jacks birth, by the fact their midwife didnt read Juliets notes before delivering him, by the fact other people working in the hospital were not stopped from asking them the sex of their new baby. Most of all, they felt isolated by how little medical professionals knew about disorders of sexual development. The midwives have never heard of it. Our GPs have never heard of it. A&E doctors dont know, nurses dont know. Its rare but its not that rare.
When it comes to wider public awareness of what it is like to be intersex, there is almost none. While the transgender rights movement gathers momentum, and a growing number of people are choosing to identify as non-binary neither male nor female those who are born outside the physical categories of male and female sex have found it more difficult to have their voices heard. They are atomised, connected only by condition-specific support groups rather than united under a broader intersex umbrella. The terminology itself is fiercely contested: some find the disorders of sexual development label deeply offensive, as it implies a defect rather than a natural state of being. Others, often parents like Juliet, prefer DSD and reject the label intersex as negative and sensationalising.
But a movement is beginning to emerge. Social media has presented fresh opportunities for older people to connect, seeing their difference as variations to be embraced rather than defects to be corrected. A new generation is campaigning so that children born like them arent forced into biological categories: either socially, by being made to identify as male or female on birth certificates and other official paperwork; or on the operating table.
The sex on a babys birth certificate is generally based on what their genitals look like, but this is only part of what makes a boy a boy and a girl a girl: there are also the ovaries or testes, the mix of hormones, the pattern of the chromosomes. Variations in any of these physical characteristics means bodies dont fall into the binary categories that make up conventional sex definitions. Sometimes these variations can lead to medical complications, such as infertility or hormone imbalances, but most intersex babies are physically healthy. Not all have ambiguous genitalia, and some dont discover their condition for years: girls with complete androgen insensitivity syndrome (CAIS) might not realise they are genetically male until they reach their teens and their periods dont arrive.
Normalising surgery to make very young children look more typically male or female has been standard practice for decades. Malta became the first country to outlaw non-consensual medical interventions on intersex people (including those too young to give informed consent) in 2015. In January this year, the Chilean government issued guidelines to doctors opposing corrective surgery, allowing them to refuse a parent and not face legal consequences. The parents of an adopted intersex boy are currently suing doctors and social services in South Carolina in the United States for removing his penis and testes at 16 months, even though it was not medically necessary potentially opening the floodgates for future litigation. But in the UK, US and Australia, there is currently no national law or guidance on corrective surgery: it is up to the individual hospital or practitioner to decide.
For the Swires doctors, there was no question as to whether or not Jack should have surgery. It was assumed that we would do certain things the whole way along, Juliet says. We werent given an option. Their neonatologist was very confident that operating on children to make them more normal was the right thing to do. His confidence gave us confidence.
After blood tests to confirm Jacks genetic makeup and assess his hormones, and scans to look at his internal organs, it was decided that he should be assigned male. But the scans turned out to have given a false result: when he was nine months old, Jack was discovered to have a uterus and fallopian tubes, albeit ones that could never produce children. These were immediately removed, because doctors said they posed a high risk of malignancy and cancer; he has had two further operations that will make him pass more easily as male. (If you imagine labia they stitched that together, Juliet explains. They called it zipping it up.) At the same time, they corrected Jacks hypospadias, a condition that meant his urethra opened at the base of his penis, moving it further up so he could pee more like a boy. He has further operations to come.
The pressure of making choices on Jacks behalf has been tough on the Swires. Im confident we have made the right decision, says Juliet. I dont see him as strikingly different to his brothers. But there are flashes of doubt generally around surgery days, when we are making the decision to make him a certain way. Based on all the information weve been given but still, we are the ones making the decisions. She adds: One of the doctors described it to us as your baby being born with an extra nose on their face. Would you leave it there, or would you fix it?
As if it were a deformity?
Yes. Cleft lip thats essentially a cosmetic thing; would you repair it? Yes, you would. It is a defect, its not how its meant to look.
The Swires decision was made without the support of psychologists or counsellors, or even family. Juliet gave up her job in childcare to take care of Jack full time, as even very close relatives have found his condition hard to accept: she says she cant trust them to change his nappy without making him feel uncomfortable.
Juliet looks at Jack as he vaults across the sofa. There is no option to be genderless in this society, she says. Would it have made a difference if there were? It might have done, she replies immediately. If you could say you could be male, female or something else, and that was a normal thing to do in unusual circumstances, then it might have made a difference. But you go with the majority, you go with what you think is right. While he is this young, I am the person making those decisions and Ive got to be confident about them. If he did identify as female as he gets older, Id want him to know I was confident that I was doing the right thing for him every step of the way.