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.
asserted
she → live → children
She was born in 1995 with an intersex variation, which can include genital, hormonal and chromosomal variations that do not reflect a typical male or female body, and affects 1.7 per cent of births.
asserted
that → bear → births
Stephanie was born without ovaries or a uterus but with male gonads.
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Stephanie → bear → gonads
Within days of her birth, doctors removed them because they were worried about the risk of cancer.
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they → remove → cancer
That decision haunts Stephanie to this day.
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decision → haunt → day
She believes she would have had a better chance of having children if her gonads had been kept, or removed and then frozen for potential future use.
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gonads → believe → 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.
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she → think → 7.30
"I feel like there is a second version of me in another universe that got to explore [having children].
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that → feel → 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.
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daughter → turn → canal
In the hospital, Linda sat in bed surrounded by pink balloons and flowers.
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Linda → sit → balloons
"My husband bathed her in the room and it was a joyous moment.
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it → bath → room
It was beautiful," she said.
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she → say → ?
But the next day a doctor came to her with some news.
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doctor → come → news
"He indicated that he wasn't sure what gender we had," Linda told 7.30.
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Linda → indicate → 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.
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babies → tell → girl
Now that we've had a proper look, we're not sure what we've got to deal with here.'
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we → have → what
"We were confused.
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We → confuse → ?
We were like, 'How can this happen?
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this → happen → ?
We've never heard of this before.'
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We → hear → this
"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?
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we → set → gender
We were even told to hold off naming her."
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We → tell → her
Linda said she felt pressured to make a quick decision about her newborn's future.
"
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she → say → future
He's then said, 'You will need to have them [the gonads] removed very quickly.'
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them → say → ?
And we said, 'How quick?
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we → say → ?
Are we looking at months, a year?'
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we → look → months
"He said, 'No, we're looking at probably next week to have surgery.
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we → look → surgery
That was because of fears that the gonads could be cancerous or become cancerous.
uncertain
gonads → become → fears
"My husband and I, we both went, 'the last thing we want now is a child with cancer.'
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we → go → cancer
We decided that we would raise her as a girl."
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we → decide → girl
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.
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Stephanie → drive → 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.
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they → lead → events
After 7.30 inquired about Stephanie's case a second batch of documents was found, fully detailing the medical procedures.
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batch → inquire → procedures
One of the reports says the gonads removed from Stephanie as a baby had no evidence of malignancy at that time.
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gonads → say → time
"It has given me answers," Stephanie told 7.30.
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Stephanie → give → 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.
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what → give → 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.
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lot → have → child
It's a real fight to have to go through the system to be able to get anything like this.
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It → have → 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.
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who → evolve → 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.
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who → be → health
"[They] should be provided with as much information as possible in order to participate in shared decision-making around treatments.
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They → provide → treatments
…and 18 more, not listed.
The Aporia