Lactation after loss: Ensuring bereaved mothers have the information they need

Written by Dr Katherine Carroll

Every year in Australia over 4000 women will experience late miscarriage, still birth, neonatal or older infant death. Despite the death of an infant being one of the most difficult and painful losses that people may have to endure, it remains an issue that is rarely openly discussed and therefore leaves bereaved families feeling alone and isolated in their grief. One aspect of this experience that is particularly shrouded in silence, and rarely discussed in healthcare settings or the home, is lactation. Many people, including bereaved mothers themselves, are often shocked to learn that it is common to produce breastmilk after a miscarriage, stillbirth or neonatal death. Other mothers, whose older babies die within the first year of life, may also have to confront the reality of managing their ongoing lactation without their infant. These mothers may have an established milk supply, breastfeeding or expressing routines, or frozen stores of milk (either in the hospital or in the home).

The onset and/or experience of lactation - and the mother’s emotional response to it - will be different for each bereaved mother. Some mothers experience lactation as a painful reminder of their loss, whilst others find lactation after infant death can be an affirming experience. Some women find it helpful to suppress lactation as soon as possible, whilst others have found that sustaining lactation and/or donating breastmilk, or even keeping breastmilk as a momento is helpful in the grieving process.

Regardless of the significance, meaning and intended use of breastmilk after infant death all women require information, support and care to ensure appropriate management and care of their breasts (to avoid painful infections such as mastitis) and to make their own decisions about how they want to manage their lactation and any existing frozen stores of milk.

Researchers from the Australian National University, currently conducting a three-year study into lactation and milk donation after infant death in Australia are finding health professionals also receive little education, training or guidance on how to deliver lactation care after infant death. Despite their desire to support bereaved families, many health professionals remain unsure of how to broach the issue of lactation after infant death; supporting the findings of previous studies that found many bereaved mothers return home from hospital without any guidance on how to manage their lactation or existing stores of breastmilk.

In an effort to obtain this information, it is not uncommon for women or their family members to search the internet for health advice on lactation after still birth or infant death. However, we know that not all online health information is reliable, complete or accurate, and furthermore that everybody has different levels of media and health literacy.

In an attempt to raise awareness of the issue of lactation after infant death and to improve the information provided to bereaved families, the research team at ANU have recently published their first research findings in the journal Health Sociology Review** (Sweeney et al 2020). This paper reports on an analysis of the lactation information provided on 21 websites from Australian health services that was intended for use by bereaved mothers. Websites were assessed against a best-practice framework developed by the research team after reviewing the international scientific literature on lactation and milk donation after infant death, including studies that draw on bereaved mothers’ own experiences of their lactation.

The authors have named their best practice framework the ‘Lactation AID Framework’ (AID = after infant death) Framework. The Framework sets out 25 information criteria, cohered into seven categories, that when provided would ensure bereaved families are presented with complete and comprehensive online lactation health information. The seven categories of critical information include: An acknowledgement of breastmilk and lactation after infant death; Information about the breast changes commonly associated with milk production; Advice on alleviation of symptoms: discomfort, engorgement, leakage, and infection; Description of full range of suppression options; Description of sustained expression option: Description of milk donation option; and Recognition that additional bereavement and/or lactation support may be necessary.

When a sample of Australia’s health websites were assessed against the best practice Lactation AID Framework, the study found just under half (10) of the 21 websites provided any explicit acknowledgement of breastmilk and/or lactation after infant death. Of those presenting information on lactation after infant death, information was limited and very few organisations provided an almost complete set of comprehensive information. This means that there is a huge gap in the provision of lactation health information to bereaved mothers both at the coal face of health care (for example, through a clinical consultation in the hospital) and in the online world. More than this, many mothers may not realise that they can use their breastmilk in a variety of ways to help them make memories of their loved infant.

The study theorised that this lack of information in society is symbolic of broader trends that inadvertently marginalise bereaved mothers and stigmatise their lactation after infant death. This hides the bereaved maternal figure in society and limits the diverse ways that lactation in bereavement is experienced and practiced by mothers. For example, the information presented on Australian websites cast lactation suppression as the dominant, assumed (or sometimes only) response to lactation after infant death, despite contemporary international research recognising that other options such as deliberately sustaining lactation for a period of time, or becoming a milk donor to a breastmilk bank, are not only available but also helpful for some bereaved mothers.

The evidenced-based Lactation AID Framework developed by the research team can now help health organisations aiming to support bereaved families, to develop and present appropriate breast care information, and to ensure women are presented with adequate, balanced, and sensitive information that empowers them to make their own informed decisions to suppress, express, donate or keep their breastmilk. These diverse options, the authors argue, support women to confront the reality of their loss in ways that are right for them.

The ANU research has presented an exciting opportunity that organisations such as the Miracle Babies Foundation and the Australian Breastfeeding Association (ABA) have welcomed. Since publishing their study, the ABA have now for the first time produced a stand-alone online resource that provides evidenced-based lactation care information designed specifically for bereaved mothers. 

24 hour family support is available for bereaved families via the Miracle Babies Foundation NurtureLine on 1300 622 243 

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?Originally published at www.miraclebabies.org.au