By Adam Spence
Dr Katherine Carroll from the ANU School of Sociology sits in the living room of a woman in Denver, Colorado to conduct an interview as part of her research into women’s motivations and experiences of donating breastmilk to a human milk bank.
This particular woman had given birth several months earlier. However, there are no toys or bottles in the room, no baby clothes or baby monitor. Significantly, the house doesn’t echo with the sounds of an infant, nor is there a baby being held in the woman’s arms.
In her interview the woman tells of her son, born at 25 weeks of pregnancy, being too small to survive. He had died months earlier, after living only a precious few hours.
She returned home from hospital, in pain – not just pain from the loss of her child, but from her lactation beginning. She wasn’t warned, she wasn’t advised.
She called a milk bank to ask if she could borrow a breast pump to remove the milk from her breasts to relieve her discomfort and discovered, she could not only borrow one, but could also donate her milk. For 10 days she expressed milk, a process that allowed her to begin the healing process, to have quiet time for reflection and emotion.
This powerful story demonstrates a gap in healthcare for women – many women are not receiving advice or being offered the full spectrum of lactation and milk donation options when their infant dies.
The international literature on nursing, palliative care and health services shows the delivery of lactation care after infant death is too often remiss, Carroll says.
“The literature talks about it being done in a very ad-hoc way, but it’s largely a forgotten aspect of health service delivery,” she says.
And though it’s a story of loss and sadness, it’s also a story of hope and healing – lactation and milk donation can be a beneficial step for some women in the grieving process after the loss.
Such experiences are driving the research led by Dr Carroll and Professor Catherine Waldby, Director of the ANU Research School of Social Sciences. They are joined by Professor Zsuzsoka Kecskes, Deputy Dean of the ANU Medical School, and Dr Debbie Noble-Carr, a Postdoctoral Fellow in the ANU School of Sociology.
Supported by an Australian Research Council grant, they are exploring the often overlooked yet vital issues surrounding infant death, lactation and breast milk donation, in the hope that mothers and medical professionals can be better informed and supported.
Why is such an important area of healthcare overlooked or avoided?
“The main issues I see are the lack of knowledge of clinicians, the emotive hurdles to bring up this issue and the lack of data to determine if this is beneficial,” says Kecskes, a neonatologist and former Director of Neonatology at Canberra Hospital. “This research will add to the little but growing knowledge there is.”
The emotive nature of the issue is a challenge, both to practitioners and researchers. It’s hard to admit that children die, and in some quarters there remains discomfort about breast feeding education.
Then there’s the contentious nature of non-normative lactation. “It’s the intersection of three taboos – infant death, lactation, and lactation after death - that makes it extremely uncomfortable, or too political to address,” Carroll says.
Of her research with nurses who work with bereaved mothers in the USA, Carroll says: “Some nurses said, ‘it’s my job to do this so I’m quite comfortable talking about lactation’. Others said, ‘I don’t feel comfortable, especially with lactation after death, it’s not my thing’.”
The main aims of the study by Carroll and her colleagues are to assess the current advice published by health services, engage with more than 100 health professionals – obstetricians, midwives, social workers and bereavement counsellors – determine the needs of frontline staff and what policies should guide them.
However, another aspect of the study – lactation – is the most sensitive to approach.
A spectrum of choices exists for women – if they know about them. The least contentious is continuing to express milk for two to three weeks to avoid breast engorgement and mastitis while the body slowly learns it doesn’t need to produce breastmilk. The most contentious is intentionally sustaining lactation for the weeks or months after infant death, perhaps with the intention of donating breastmilk. The convention is to cease lactation as soon as possible.
“Donation after infant death is not common practice,” Kecskes says. “Common practice would be to educate the woman on how to suppress breast milk production or, if there is a surviving sibling, not worry and help her express for the surviving baby.”
Yet the act of expressing milk, and even donating it, may be beneficial in the healing process.
“Milk donation can be a way of memorialising the life of their child and making meaning from it, just as organ donation can be,” Carroll says. “Breast milk is highly symbolic and a product of motherhood.”
To better understand this, the team is interviewing mothers whose infants have died. It can be a challenging experience, but a positive one as well, as Noble-Carr says: “When given the opportunity to tell their story, people will very often grab it – you can tell that very often people haven’t had that opportunity.”
Although lactation and milk donation have great potential to assist in the grieving process, help mothers honour their deceased children and find some meaning and hope, the research team is not advocating specifically for it.
Rather, they want to see health professionals equipped to present a spectrum of evidence-based lactation and donation options to bereaved mothers, and for patients to have the support they need to make a fully informed choice. Some mothers prefer to cease lactation quickly, others feel proud and positive continuing to do so and to donate.
Already medical professionals are embracing this research and using it to influence choices. But perhaps it’s the woman who stood up at a medical conference Carroll attended in 2016, who so poignantly demonstrates the impact of research in this area. In tears, the woman spoke of her own loss and said if she had been given the option 30 years ago, she would have donated.
“If I could help lactation be better understood and meet the needs of bereaved mothers about lactation and donation, that’s just one little grain of sand that I could lift off the grief experience,” Carroll says. “That’s really important to me.”
Dr Carroll is co-author of ‘Suppress and Express: Breast Milk Donation After Neonatal Death’ in Mothers without Their Children, Demeter Press, due for release in early 2019.
Find out more about life-changing research at the ANU Medical School.