During your labour the midwife says, “Do you know what you’re having?” When the baby is born there is a quiet pause. “We’ll just call someone to come and take a look at baby,” they say.
Once every three days in the UK a midwife will spot that a baby’s sex development is different (referred to in healthcare as DSD). Sometimes DSD will be discovered later, for example during puberty when a teenage girl doesn’t start her periods - tests could show she has XY chromosomes and internal testes or XX chromosomes but hasn’t developed a womb.
Coverage surrounding Caster Semenya, and other debates about how to categorise sex and gender have generated a lot of confusing, inaccurate and sensationalised information around different sex development. All of this without thinking about the children and young people with different sex development and their families.
‘Different sex development’ is a term that is used to describe a range of conditions affecting the development of the genitals and reproductive organs. Factors like chromosomal variation, genetics, and sometimes infertility drugs can affect whether a person can produce or respond to sex hormones, which in term determines how the genitals and reproductive organs develop.
What do doctors mean by ‘atypical’ or ‘ambiguous’ genitalia?
For a girl this can mean that her clitoris is larger than usual, or her labia are fused together and bumpy. Sometimes a boy can have a penis with its opening at the base of the shaft, or the penis can be small and tethered to one side. Sometimes the scrotal sac can be shaped into two parts.
Spending your baby’s first week in a specialist children’s hospital learning about sex development can be extremely stressful. Sometimes a baby will need lifelong medication, for example if they have Congenital Adrenal Hyperplasia (46XX), which accounts for nearly a third of people with a DSD. Excellent guidance about those first few days can be found in our first days information pack.
Girls with a Y chromosome often don’t get a diagnosis until puberty. This can happen for girls with Complete Androgen Insensitivity Syndrome, which was featured recently in ‘Call the Midwife’ (BBC1, 2019). A young woman about to be married was concerned that she had not started her periods. Unknown to her, her body had transformed the testosterone produced by her testes into oestrogen, meaning she had an otherwise typical female puberty. The story centred on her diagnosis and the psychological impact it had. Thankfully, care surrounding the way the DSD is investigated and discussed has improved since the 1960s, but there is still some way to go. When a young woman discovers that she has a short vagina and no womb, she can need the support of a well-informed, loving family and help to understand her body.
Overall there are more than 40 different known biological pathways that affect sex development. Some people with different sex development reject the healthcare term DSD and prefer to use ‘intersex’. Most of the people that we meet are not interested in umbrella terms and prefer to learn about their own bodies - when talking to healthcare professionals they use their specific diagnosis or variation.
Dsdfamilies is a registered charity that provides information and support for children and parents. We have a website for parents and one for teens.
We have just published ‘Listen to Us’, a unique report following consultations with children, young people and adults living with DSD, and their families. It highlights the emotional and psychological needs of those living with DSD, as well as shortcomings in existing care. We’re calling for peer and social support, quality resources and thoughtful healthcare. Read the report.
This report was also raised recently on BBC World Service Health Check, where Patricia and Esme spoke about living with different sex development. Listen to the podcast (from 9m27s to 16m55s).
We are currently increasing our presence on social media, and are tweeting regularly with information on DSD conditions and factual support for parents and families @dsdfamilies
We support children, families and healthcare providers to raise happy, healthy, confident and well-informed young people who can speak up for the support they need.
Kate Davies will be returning to the post later this week to answer some user questions. Please note we cannot offer individualised medical advice on this thread.
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Guest post: ‘Differences in sex development’ (DSD) – what does it mean?
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MumsnetGuestPosts · 11/06/2019 09:26
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