Call the Midwife: What is Testicular Feminisation Syndrome?

The BBC drama tells the story of one woman's life-changing diagnosis with this rare condition

Holly Freeman plays Lois Parry in Call the Midwife

Call the Midwife has gained a reputation for tackling medical issues with sensitivity and humanity: so far in series eight, we’ve seen sickle cell disease, backstreet abortion, and a baby born with cleft lip and palate.

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Episode five introduces us to a young woman who, in the run-up to her wedding, discovers she has what was then known as “Testicular Feminisation Syndrome”. Both Dr Turner (Stephen McGann) and Nurse Trixie Franklin (Helen George) find themselves out of their depth as they attempt to support her through a traumatic medical examination and a difficult diagnosis.

Here’s what you need to know about the condition…


What is Testicular Feminisation Syndrome?

Dr Turner and Miss Higgins in Call the Midwife

Dr Turner’s patient in Call the Midwife is a young woman who appears (and feels) entirely female, with female anatomy including breasts and a vagina. However, she does have some concerns she wants to check out in the run-up to her marriage: although she is 22, she has never started her period.

At the hospital, the young woman is diagnosed with a rare condition called Testicular Feminisation Syndrome, an intersex condition which is now known by the more accurate name Androgen Insensitivity Syndrome (AIS). Intersex people used to be called “hermaphrodites,” but this term is now considered misleading and offensive.

A person born with AIS is genetically male, with both X and Y chromosomes. However, the external appearance of their sex organs is female (or ambiguous between male and female). In other words, they can appear physically female – but be genetically male.

The cause is usually a genetic fault passed on to a child by their mother – if a mother is a carrier, there is a 1 in 4 chance her child will be affected. Despite being genetically male, the body of someone with AIS does not respond to the male sex hormone testosterone in the usual way, and therefore male sexual development does not follow the normal pattern.

As the baby grows in the womb, the penis doesn’t form or is underdeveloped, and testicles will be fully or partially undescended – which may leave the child with what appears to be female genitals.

A person with AIS will not have a womb or ovaries, and most people born with the condition are unable to have biological children. The vagina will also be shorter than normal, which may make penetrative sex difficult.

The condition may be diagnosed at birth, or may not be identified until much later in life, depending on the form of AIS. A late diagnosis can have a huge psychological impact.

When AIS is identified early, some parents will choose to raise their children as boys and some will raise them as girls. In some cases, children with AIS will undergo surgery to make their genitals more “male” or “female”, or are given hormone treatment to encourage “male” or “female” development. But in recent years there have been calls to limit life-altering surgeries before children have reached an appropriate age of consent.


Why is Call the Midwife telling this story?

Discussing the upcoming storyline before the launch of Call the Midwife series eight, creator and writer Heidi Thomas said this was more than a medical story. “It’s about questions of identity: who are we?” she asked. “Who do we think we are? What does it mean to have a female body?”

But while news that Call the Midwife was set to feature its first-ever intersex character hit the headlines, Thomas is keen to stress that Androgen Insensitivity Syndrome is a distinct issue with its own nuances.

“I feel that it’s been wrongly sensationalised by the press, who are perhaps looking for an up-to-the-minute contemporary story about ‘gender’,” she told RadioTimes.com at the Radio Times Covers Party.

“But we are telling a story about a young woman who discovers something about her anatomy when she is a young adult, so it’s not the story that it is being sensationalised to be. But it is something that in my own medical research and reading, struck me as being a very profound experience for an individual to have.

“That’s always the starting point: what is profound? What is challenging? What moves us? And I did think that was a story that the more we looked into it, the team researching it, we felt there were more corners and more nuances within the story that we wanted to bring to fruition.”

This article was originally published on 10 February 2019

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Call the Midwife airs on PBS on Sundays at 8/7c