Permanent Loss: Detransitioned Woman Grieves Inability to Breastfeed After Mastectomy

Breastfeeding Grief After Chest Masculinising Mastectomy and Detransition

Case reports Detransition & regret Surgery

Authors: Karleen D. Gribble, Susan Bewley, Hannah G. Dahlen
Journal: Frontiers in Global Women's Health
Year: 2023
Source: www.frontiersin.org/articles/10.3389/fgwh.2023.1073053/full

Summary

This paper tells the story of one woman who had her breasts removed as part of a gender transition, later stopped transitioning, and then grieved deeply when she could not breastfeed her baby. The authors point out that the main transgender health guidelines (WPATH, AusPATH and PATHA) do not tell surgeons to discuss breastfeeding before this surgery. They also describe how midwives and doctors who did not understand detransition made her pregnancy and early motherhood harder. They call for honest talks about breastfeeding before surgery, better training for maternity staff, emotional support and access to donor milk. It is a vivid and useful warning, but it is one person's account, told from memory and not checked against her surgical or clinic records, so it cannot tell us how common this experience is.

Key findings

Elizabeth was diagnosed with gender identity disorder and prescribed testosterone at 18. At 20 she had both breasts removed, with her nipples grafted back on. She recalls no talk about how this would affect breastfeeding.
The surgery left thick, painful scars and nipples that hurt and leaked. Together with being rejected by transgender friends and vaginal dryness and thinning from testosterone, this led to a crisis, and she stopped transitioning at 24.
Elizabeth said she would probably have refused a breastfeeding conversation back then. She now sees that as avoidance, with her gender distress used as a 'trump card' that shut discussion down.
Pregnant at 30, she grieved being unable to breastfeed. Her midwife told her to 'just formula feed' and a doctor kept calling her a man. The confusion led to a child protection report, while a milk bank kindly gave her donor milk.
The authors note that international and Australian transgender health guidelines (WPATH, AusPATH and PATHA) do not advise talking about breastfeeding before this surgery. They argue that grafting the nipples almost certainly makes breastfeeding impossible.
They argue that research on how often people detransition, and on the benefits of breast removal, especially in teenagers, is poor: people are followed for only a short time and many drop out of the studies.
They recommend honest breastfeeding counselling before surgery, maternity staff training about detransitioned women, emotional support for breastfeeding grief, and access to donor milk.

Abstract

An increasing number of young females are undergoing chest masculinisation mastectomy to affirm a gender identity and/or to relieve gender dysphoria. Some desist in their transgender identification and/or become reconciled with their sex, and then revert (or detransition). To the best of our knowledge, this report presents the first published case of a woman who had chest masculinisation surgery to affirm a gender identity as a trans man, but who later detransitioned, became pregnant and grieved her inability to breastfeed. She described a lack of understanding by maternity health providers of her experience and the importance she placed on breastfeeding. Subsequent poor maternity care contributed to her distress. The absence of breast function as a consideration in transgender surgical literature is highlighted. That breastfeeding is missing in counselling and consent guidelines for chest masculinisation mastectomy is also described as is the poor quality of existing research on detransition rates and benefit or otherwise of chest masculinising mastectomy. Recommendations are made for improving maternity care for detransitioned women. Increasing numbers of chest masculinisation mastectomies will likely be followed by more new mothers without functioning breasts who will require honest, knowledgeable, and compassionate care.

Conclusion

Until recently, it would be extremely unusual for a new mother to have had a mastectomy. With increasing numbers of female adolescents and young adults obtaining chest masculinisation mastectomies, more new mothers will present without functioning breasts. Some will retain a transgender identification and others will have detransitioned. Each requires an individualised approach to provide them and their infants with honest, knowledgeable, and compassionate care.

Methodological limitations

Only one person: The report describes one woman's experience. As the authors say, we don't know how typical it is of detransitioned women, and it cannot show how often breastfeeding grief or poor maternity care happen.
Told from memory years later: The account comes from one three-hour interview a decade or more after surgery. Her memory that breastfeeding was never discussed, and her views on what her doctors thought, cannot be checked.
Key records missing: Elizabeth provided pregnancy records, a milk bank referral and photos of her scars. Her surgery, consent and gender clinic records were not reported, so what she was told before surgery is known only from her memory.
How she was found isn't explained: The report does not say how the authors came across Elizabeth. She describes being a 'trans activist' and later 'persona non grata', so she may have been found through detransition networks.
Story written with her: The case was written 'in consultation with Elizabeth' and she approved the final paper. This respects her, but it means the authors were less independent in how they told the story.
Authors have stated views: The authors have written before about sex-based language in maternity care and about regret after gender surgery (three of the cited papers are their own), and they frame the case as 'unanticipated harm'. They declare no financial conflicts, but readers should know their positions.
Staff side not heard: The midwife, doctor and surgeon were not asked for their views. Explanations for how they acted, for example that they were following transgender care training, rest on the patient's interpretation.
Breastfeeding claims borrowed from other surgery: The authors admit there is no research on how different breast removal methods for transition affect breastfeeding, so they rely on breast reduction studies. The case is strong for grafted nipples, but less certain for other methods.
Evidence judged unevenly: The report sharply criticises studies that find low regret for short follow-up and dropouts, but cites surveys of self-selected detransitioners (such as Littman 2021) without the same criticism.
Some details changed: The authors say 'some details have been changed to preserve anonymity'. This is reasonable, but readers can't know which details are exact.

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Summary

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Abstract

Conclusion