Irreversible surgery as a baby left Stephanie with lifelong questions that are only now being answered

Doctors removed this intersex woman's gonads shortly after birth, the decision changed her life Stephanie Saal has lived with a series of what-ifs since doctors carried out irreversible surgery on her as a baby that she believes reduced her chances of having children. Born in 1995 with an intersex variation, a term that includes genital, hormonal and chromosomal variations that do not reflect a typical male or female body, and affect 1.7 per cent of births. Stephanie was born without ovaries or a uterus but with male gonads. Within days of her birth, doctors removed them because they were worried about the risk of cancer. That decision haunts Stephanie to this day. She believes she would have had a better chance of having children if her gonads had been kept, or removed then frozen for potential future use. "I think that has created a big void and a lot of unanswered questions, a lot of what-if questions," she told 7.30. "I feel like there is a second version of me in another universe that got to explore [having children]. 'Joyous moment' turns to rushed confusion Stephanie's mother, Linda, said her daughter burst into the world a little bruised and "blue" but overall healthy after a fast trip through the birth canal. In the hospital, Linda sat in bed surrounded by pink balloons and flowers. "My husband bathed her in the room and it was a joyous moment. It was beautiful," she said. But the next day a doctor came to her with some news. "He indicated that he wasn't sure what gender we had," Linda told 7.30. "We were told, when she was born last night, that she's a girl and she looked like a little girl, and he said, 'All babies can look a bit puffy and a bit different. Now that we've had a proper look, we're not sure what we've got to deal with here.' "We were confused. We were like, 'How can this happen? We've never heard of this before.' "Everything was set, ready to go, and now we've got to pause button on this and we've got to reconsider our baby's gender? "We were even told to hold off naming her." Linda said she felt pressured to make a quick decision about her newborn's future. "He's then said, 'You will need to have them [the gonads] removed very quickly.' And we said, 'How quick, are we are looking at months, a year?' "He said, 'No, we're looking at probably next week to have surgery." That was because of fears the gonads could be cancerous or become cancerous. "My husband and I, we both went, 'the last thing we want now is a child with cancer.' We decided that we would raise her as a girl." Medical records uncovered Driven by the desire to understand what happened to her as a baby, Stephanie set off on a search early last year for her 1995 medical records. It led her to a batch of documents released under right to information laws but they proved to be a dead end, shedding no light on the events of 30 years ago. After 7.30 inquired about Stephanie's case a second batch of documents was found, fully detailing the medical procedures. One of the reports says the gonads removed from Stephanie as a baby had no evidence of malignancy at that time. "It has given me answers," Stephanie told 7.30. "It hasn't given me every single answer, but what it has done is it's provided a timeline of what has happened to me. "I'm very, very glad that I have these papers because this has just provided so much more information, and I think it's a very rare thing for a lot of people to have this much information about their life as a baby and as a child. "It's a real fight to have to go through the system to be able to get anything like this." No easy answers in intersex healthcare Healthcare for intersex people is complex and has evolved over the past 30 years, paediatric endocrinologist and Monash University lecturer, Dr Jacky Hewitt, who was not involved in this case, told 7.30. "With time there's been increasing understanding that young people should be involved in decisions regarding their own healthcare," Dr Hewitt, who has advised governments and international organisations on intersex health, said. "[They] should be provided with as much information as possible in order to participate in shared decision-making around treatments. "This is what has been happening internationally and also in Australia." Medical understanding around cancer risk in intersex people has also changed. "We know that some children will develop cancer in childhood if we don't mitigate that risk for that child," Dr Hewitt said. "These cancers can have serious outcomes. But with time now we've discovered that we can counsel more individually around that risk. "For some individuals we're able to accept the risk and monitor for it and leave the gonads in the individual and consider removing them only later on." Dr Hewitt said the while the chances of preserving fertility in intersex cases was low, scientific advances are raising hopes that might change. "For an individual with variations of sex characteristics, even having progressed through puberty, often the sperm are not able to be used for fertility treatments, even if cryo-preserved as they are. "However, there is likely to be future technologies that scientists are working on where we would maybe able to use that tissue if it had been stored." A changing legal landscape Stephanie is now campaigning for nationwide legal changes to prevent irreversible medical procedures on children born with sex characteristic variations. Some jurisdictions have already shifted to delayed treatments and provide greater safeguards for intersex rights. Victoria introduced such laws in February this year while the ACT did so in 2023. In developing its laws the ACT government heard harrowing accounts from intersex people. "Everything from physical harm to psychological harm, extreme distress from individuals who felt they had their bodies mutilated without their consent," Chief Minister Andrew Barr told 7.30 in 2023. In Queensland, where Stephanie was born, there are no specific laws but Children's Health Queensland told 7.30 in a statement that under current processes: "Critical management decisions are typically deferred to give the child an opportunity to participate in decisions about their care as they grow." "Surgical intervention in infants and young children is only undertaken when it is medically necessary and cannot safely be delayed." Children's Health Queensland stood by the original surgery on Stephanie as best practice at that time, given that removal of gonads does not necessarily mean there is malignancy at the time but it may occur later in life. "A clinical decision to remove gonads in individuals identified as having an unacceptably high-risk of developing a future malignancy only occurs after extensive consultation between specialist clinicians and families," it said. The Australian Medical Association (AMA) is reviewing its position on intersex interventions, however federal president Dr Danielle McMullen said "the AMA supports an inclusive health system for intersex people". "Our position statement on LGBTQIASB+ calls out the harms which can be associated with medical interventions carried out for 'normalising' purposes where there is no significant health risk." Watch 7.30, Mondays to Thursdays 7:30pm on ABC iview and ABC TV