My name is Kriss Fearon and I’m based at the Centre for Reproduction Research at De Montfort University in Leicester. My research is about reproductive decision making in the context of Turner Syndrome. I’m talking to women with TS about how they decide how to have a family. I’m also talking to mums of girls with TS about how they make decisions that could affect their daughter, such as whether to freeze their own eggs for their daughter to use in later life.
So far I’ve talked to five women with TS and three mums of girls with TS. Each one has been really thoughtful in their approach to the way TS affects having a family. Average couples often focus on avoiding pregnancy until the time is right, so discovering they have a problem conceiving can come as a massive and unexpected shock. By contrast, people with a lifelong condition that affects their fertility have often thought long and deeply about whether they want to have a family, and the way they would prefer to do that, well before they are in the position to start making those choices. Talking about fertility can raise difficult and sometimes painful matters, such as how and when to tell a partner, and how to balance the constraints of time, budget and health when deciding which family-building option to choose.
I’m using a method called ‘photo elicitation’, where I ask people to bring three photos that help them express their thoughts and feelings about TS and having a family. We start off the interview by talking about them. It’s a way for people to decide in advance what they want to say, and lead me through the interview, rather than me simply asking them lots of questions. Photos can express better than words just how complex it is to live with TS: one mum whose daughter was diagnosed at birth showed me a picture of a beautiful landscape with sunshine shining through stormy grey clouds, and said that it expressed her joy at having her much-wanted daughter, her pain that her daughter might not get to be a mum herself, her worries about the future, and the stress caused by lack of clarity about what having TS would mean for her daughter’s health.
Listening to the personal stories that people have trusted me with is a very moving experience, and one which has got me thinking about how this research can go beyond academic publications to providing information that could support women with TS. While the academic work may help doctors and counsellors have a better understanding of the needs of women with TS and their families, it’s clear that support from peers and charities has been essential in helping women see what choices are there, and in feeling less alone in making them.
I am still looking for women to interview, so if you are a woman with TS or mum to a girl with TS, and you have thought about or decided on how to have a family, I would love to hear from you.
If you would like to find out more, please contact me by email at firstname.lastname@example.org, or through the website or Facebook page.