Recognizing the work people perform to help others is an important part of any definition of a social good. In the case of donor human milk, there is a particular need to recognize the unnamed mothers who literally donate of themselves to make this invaluable health provision possible. These women are drawn from all across the UK and, as they donate milk every day for the most vulnerable people in our society, they deserve more than a passing mention. They are the heart of an extraordinary service which has existed in Europe for over hundred years and which represents the first medically controlled human-products health services, predating the medicalization of blood by several years (Swanson, 2014; Cassidy and Dykes, 2019 ). Although there has been a movement in the UK towards more community-midwifery facilitated births (Walsh et al, 2018), since the establishment of the NHS in 1948, for the most part everything surrounding birth has become increasingly medicalized, including lactation (Dykes, 2006). Before these changes in UK health services, ‘SOS calls’ for human milk were common. For many healthcare providers, human milk was “white blood,” essential for at least the first six months of an infant’s life, and especially for those who enter this world under highly medically controlled circumstances, such as often happens in the context of preterm births.
The first formal medically controlled donor human milk service in the UK was linked to Queen Charlotte’s Maternity Hospital, now called the Queen Charlotte’s and Chelsea Hospital (QCCH), which opened in London in 1939 (Cassidy and Dykes, 2019). Predating the National Health Service (NHS), the milk donation program was originally financed as part of the philanthropic endeavours of Sir Julien Cahn, Chair of the Birthday Trust between 1930 and 1944, and himself a parent to a prematurely born infant who had died. Cahn provided funds for the long-time hospital matron Edith Dare to travel to the US to receive training in their ‘state of the art’ service and offered funds for equipment and running costs. These philanthropic funds financed the milk bank until Dare’s retirement and seem to have been more limited than its original goals. Although this bank was originally touted as a national service, the programme primarily provided for infants in the greater London area, although it did offer outreach discussions to other areas across the UK, which resulted in a second service opening in Cardiff in 1947. In early 1948, Edith Dare retired, having served with distinction as matron for 28 years (although she had worked at the hospital since 1911). Dare was awarded Officer of the Order of the British Empire (OBE), as well as being made honorary director of the QCCH donor human milk service for life. Coincidentally, 1948 is the same year the NHS began, which marked an important development in approaches to how society can and should fund healthcare provision. However, the birth of the NHS in 1948 also saw changes to the donor human milk service across the UK, which were all to change again with the devolution of health care in 1998 shaping our current system.
Across England today, fourteen of the sixteen UK Association of Milk Banks (UKAMB), are located in the greater London area, which has the potential to foster not “choice” so much as a more negative framework of “competition” – a trend that UKAMB is working hard to counter. Many of these banks are linked to individual hospitals, providing an underlying potential financial benefit to having this service within the NHS, which, in the context of cash-tight UK health provisions, can be considered extremely important. Furthermore, the additional potential financial benefits associated with research and human milk raises even more concern.
Now considered an essential UK-wide national health service, donor human milk programs were significantly affected when healthcare became devolved in 1998. In an invited review, Greer (2016) has argued that the experiment of devolution is itself responsible for the lack of support for the NHS in England, and the essentially four health systems that exist across the UK. He argues that while the English system concentrates on choice and competition, the equally old Scottish system emphasizes partnership and mutuality. In Northern Ireland, healthcare provision is a frequently ignored political issue, whereas Wales has witnessed real innovation. With regard to donor human milk services, Wales no longer has an independent service, and has been reliant on innovative cross-border cooperative partnerships, the largest of which is linked to the Northwest Human Milk Bank, and which, although part of the English system, has been extremely innovative. However, the first community-based donor human milk service in the UK actually developed in Northern Ireland and is related to the ‘Good Friday’ agreement. This development has resulted in important island-wide services and cross-border health cooperation, and is linked, as I will discuss in a moment, to expansions of donor human milk services across Europe. An important part of the Irish service is its link with policy support for breastfeeding in particular. This link emphasizes the perspective that donor human milk is not a replacement for formula and should always be seen as a bridge to support a mother’s own breastfeeding.
Donors in the UK are not paid for their contributions and any potential financial gain linked to human milk donation could be perceived pejoratively and evoke negative stereotypes associated with wet nursing, particularly in the UK and US. Anthropologists have consistently observed that some form of allomaternal nursing (feeding infants with breastmilk from women other than their biological mother) has been common across human cultures throughout history. However, contemporary Western attitudes around breastfeeding have tended to isolate the mother and infant. In contrast, donor human milk services rely on notions of social good and maternal generosity.
The interplay between maternal generosity and maternal exchange is perhaps most evident in the Scottish model. In Scotland, the One Milk Bank for Scotland service is a much more integrated concept and is considered an essential health provision, with each of the fifteen health trusts paying a year-long subscription fee based on size, enabling the service to be free to all those who are in need. Meanwhile, in Northern Ireland, the English system of per unit cost was adopted and, in many ways, this may be the reason that this system ultimately fails. As mentioned above, the first community-based donor human milk service in the UK, the Human Milk Bank, is in Northern Ireland, and operates as part of the HSC (Health and Social Care). The Human Milk bank was established at the end of the 20th century in order to provide an exclusive human milk diet to an infant who had developed necrotizing enterocolitis (NEC), the same disease directly responsible not only for this author’s involvement in the world of donor human milk services, but also for the exponential expansion in milk banking provision which has been occurring across the world (Cassidy and Dykes, 2019). For many years this exemplary version of cross-border health cooperation operated quietly, often only becoming known to families whose infants were in some way directly connected with the need of this healthcare provision. By 2003, Northern Ireland’s Human Milk Bank was to become the largest donor human milk service provision across the UK, currently second only to the Northwest Human Milk Bank service in Chester.
In 2012 the manager of Northern Ireland’s Human Milk Bank service was awarded an MBE (Member of the British Empire), but was keen to make clear that the work bank is “very much” a team effort, citing not only the small group of people that run the service, but also those who transport the milk, the laboratory staff who test the milk, and last, but certainly not least, the donors and their families. She was also very keen to accept the award as “breastfeeding co-ordinator” as part of her official NHS title. Three years before this, in 2009, and more than 50 years after Edith Dare received her award, the founder of the Northwest Human Milk Bank received an MBE. The first modern service to be completely funded by charity donations, and originally located at the Countess of Chester hospital, it amalgamated with the Wirral bank and moved to the University of Chester, becoming the largest donor human milk service across the UK, servicing all requests across England and Wales. The experiences between Northern Ireland and Chester increasingly mean that a difference based on hospital versus community-based services is less relevant to our understanding of the UK system. However, more important distinctions are found in how each service is financed, and in the links to support for breastfeeding in the larger community, particularly when considering the four services involved in the MUIMME study.
The expanding global donor human milk services are keen to be seen as a bridge to support mothers, rather than be considered as an alternative to formula (Brandstetter, et al, 2018). In both Scotland and Northern Ireland donor human milk services are seen as forming an intimate bridge with infant feeding support services, a feature which may or may not exist in various services across England, part of the feature of so-called “choice” and ultimately involving competition between services. However, economic constraints in the NHS results in these services not being as valued as they should be. Furthermore, the stigma often attached to breastfeeding in general across the UK, but especially to other mothers’ milk in particular, is also significant, evoking what has been referred to as a so-called ‘yuk’ or ‘ick’ factor, expressive of embodied visceral emotions (Shaw, 2004; Cassidy and Dykes, 2019). The long-term health gains of using donor human milk are not immediately quantifiable, and therefore such services run the risk of not being supported in a more defined market-oriented model. Yet, investing in supporting mothers to feed their own infants, as well as when possible, to help others, leads to invaluable health benefits for everyone involved.
Stigmas attached to breastfeeding are still prevalent across the UK, and in areas where choice and competition prevail, support for breastfeeding services is often devalued. This does not, however, seem to be the case in Scotland. The devolution of health care in the UK resulted in the termination of a national breastfeeding survey in 2010, which has meant that individual nations are now taking up this issue independently and therefore differently. In Scotland, a system which takes pride in partnership and mutuality is expanding, whereas in England competition and choice has resulted in a lack of support for mothers, and a need to rely on the charity of others. Innovative discussions in Wales are still ongoing. However, in Northern Ireland the often politically neglected issues of healthcare have changed in the context of an island wide cross-border cooperation, which is firmly linked to expansion elsewhere in Europe.
These changes became more pronounced in 2016 when an immediate concern following the vote to leave the EU was how the Irish cross-border donor human milk service would continue in the context of the threat of a “hard border”. In October 2016, Scottish MP Alison Thewliss raised this question and was told: “The issue of milk bank sharing is a devolved matter and as such falls to the Department of Health in Northern Ireland. However, the UK Government’s focus remains on making a success of exiting the European Union and getting the right deal both for Northern Ireland and the UK as a whole.” Shortly after, the Northern Ireland donor human milk service finally moved to a new location and was no longer “in the community” in quite the same way but was now given more space and a sterile environment in the hospital. However, routine checks on the hospital’s water systems revealed safety concerns, which resulted in the service being suspended for almost ten months.
We in the milk banking community had all been worrying about what might happen regarding the Irish dimension of Brexit, worries highlighted by Ireland’s major crisis involving a need to shut down its services for an extended period of time leaving those hospitals dependent on their services searching for help. During the service suspension, we were almost transported back to the days of ‘SOS for breast milk.’ Luckily, the SOS call was answered by the Northwest Human Milk Bank in Chester. As the largest human milk service in the UK, they have become accustomed to dealing with cross-border cooperation. Indeed, the world of donor human milk services is rapidly changing and expanding around the world. Many of these changes are happening simultaneously, and one of these is linked to issues of governance, not only in times of crisis, but also cooperatively, all of which are important to the future of UKAMB.
As the scientific evidence mounts regarding the long-term health benefits associated with feeding at the breast for both infants and their mothers, we need to value the work and labour associated with mothers and their families. Positive breastfeeding messages need to be the norm, and a recognition of the role of alternative feeding methods when needed is also of decisive importance. Mothers and their families should not be left to face these challenges alone, and women who donate their milk often discuss how their donation is seen as giving something back to others who are not able to feed their infants. Most often, donor human milk has been used for infants born prematurely, whose mothers are disproportionately likely to experience delayed lactation due to their premature birth and are therefore in need of special lactation support. The global donor human milk community sees donor milk as a bridge to breastfeeding, and not as an alternative to formula. The Scottish and Irish services in particular both were originally developed with the intention of integrating donor human milk into their breastfeeding programs. We know that when a mother is able to feed her own infants, in some cases, that means she might also wish to express to help other mothers also feed their infants, at least until their own supply is available. Only in the rarest cases would donor milk be a continued source of feeding for an infant long-term. During my research in London, Scotland, Chester and Ireland, I found that many of these services were actively provided to mothers they call ‘community mothers’, despite being part of the NHS. All the donor human milk banks involved in my research were also active supporters of other research projects, another key contemporary issue associated with the provision of this health care service, and the expansion of human milk exchange globally.
Works Cited
Cassidy, Tanya M., & Dykes, Fiona C. 2019. Banking on Milk: An ethnography of donor human milk relations. London: Routledge.
Dykes, Fiona C. 2006. Breastfeeding in Hospital: Mothers, Midwives and the Production Line. Routledge, London.
Greer, Scott L. 2016. Devolution and health in the UK: policy and its lessons since 1998, British Medical Bulletin. 18(1): 16–24, https://doi.org/10.1093/bmb/ldw013
Shaw, Rhonda. 2004. “The Virtues of Cross-Nursing and the Yuk Factor.” Australian Feminist Studies: Special Issue on Cultures of Breastfeeding. 19.45:287-299.
Swanson, Kara. 2014. Banking on the Body: The Market in Blood, Milk, and Sperm in Modern America. Cambridge, Mass.: Harvard University Press
Walsh, Denis, Helen Spiby, Celia P Grigg, Miranda Dodwell, Christine McCourt, Lorraine Culley, Simon Bishop, et al. 2018. “Mapping Midwifery and Obstetric Units in England.” Midwifery 56 (January): 9–16. https://doi.org/10.1016/j.midw.2017.09.009.
Acknowledgements
This discussion is based on the largest study of donor human milk services conducted by a senior researcher and funded by the EU Horizon 2020 Marie Skłodowska Curie Award (MSCA) through the career restart stream (Project reference: 654495). I also wish to thank all those who contributed to the my ethnographic data collection from each of these four major UK services, encompassing all of the many people involved, including the NHS staff, volunteers, but most importantly donors, without whom this service would never be possible, all of whom have amazing and important contributions to make to the global discussion regarding the expansion of this vital medical donor human milk services and deserve recognition for all of their contributions.
Tanya M. Cassidy lectures at Dublin City University (DCU). She is a Fulbright-HRB (Irish Health Research Board) Health Impact Scholar (2018-2019), housed in the Department of Anthropology at MIT. Her EU Horizon 2020 Marie Skłodowska Curie Award (MSCA) project was housed in the Maternal and Infant Nutrition and Nurture (MAINN) unit at the University of Central Lancashire (UCLan) and is being published with Routledge. After returning from her maternity/career break she held an Irish Health Research Board senior Cochrane Fellowship in the Department of Anthropology at MU. Originally from Canada, she was trained at the University of Chicago where she conducted her doctoral work families, food, culture and health in Ireland. As a feminist researcher with medical anthropological frames she has published on food, drink, ambivalence, and human milk exchange.