I am a midwife with 14 years' experience, and I have encountered cases of miscarriage, stillbirth and neonatal death throughout my career. Perinatal loss can have a devastating impact on women and their families, leaving them with a profound sense of grief and emptiness (Gandino et al, 2019). However, when your own life journey places you on the other side, and you are the new mother suffering the loss, I found that you experience it in a way that empowers you to change the world. In my opinion, trauma following perinatal loss can lead to depression but also to regrowth and learning. Research and anecdotal literature indicates that personal pregnancy loss can have a lasting impact on a healthcare professional's life (Musodza et al, 2023). However, there is limited literature available on midwives' experiences in perinatal loss (Musodza et al, 2023).
This article uses Gibbs' (1988) reflective cycle to explore my experience of perinatal loss. The cycle consists of six steps to reflect on an experience, which are description, feeling, evaluation, analysis, conclusion and action plan.
Description
On 24 April 2019, I gave birth to my second baby, Hugo, who was diagnosed with a congenital diaphragmatic hernia during early pregnancy. Despite our preparations, Hugo's condition was severe, and he passed away at just 4 hours old. Although I had harvested colostrum antenatally, I had not thought about lactation postpartum, as I was focusing on enjoying my pregnancy, Hugo's care and the possibility of surgery.
When we were told how sick he was and our plan for surgery was turning into palliative care, I realised how little time we had left with him. At that moment, the idea of suppressing lactation seemed like the wrong thing for me. I felt that all I had left after saying goodbye to my son was the signs of pregnancy and labour in my body, and suppressing lactation would interfere with that. Breast milk came in on the third day postnatally and my initial reaction was to look for the breast pump and express, it was Hugo's milk and, for my body, he was still with me. I expressed 150ml of breast milk and knew straight away that I wanted to donate it in Hugo's memory. I had been working in the neonatal unit in the maternity hospital, so I knew how important it was for premature babies to have breast milk.
People have invented spacecraft, artificial intelligence and a quantum computer, but cannot yet fully replace women's breast milk. This is because breastfeeding is not only about nutrition, but also about formation of the microbiome, immunity and other protective mechanisms of the body, as well as being about psychological comfort and much more (UNICEF, 2022). The benefits of breastmilk are apparent not only in the preterm population to reduce risk of necrotising enterocolitis and sepsis, but also in the longer term to reduce obesity, improve cardiovascular outcomes, reduce risk of immune-mediated illness and potentially result in improved cognitive outcomes (Ottolini et al, 2020; Donovan et al, 2023). Some of these benefits may be mediated by the key role that breast milk has in modification of the gut microbiome (Granger et al, 2021). Despite clearly demonstrated benefits and unequivocal recommendations for the use of donor human milk, there is a lack of national guidance in this area in many European countries (Donovan et al, 2023).
I donated breastmilk for a few months, a total of 9 litres that I proudly handed to the Blood Bikes East emergency medical transport charity to bring to the human milk bank in Enniskillen, Northern Ireland. Every pumping session was healing, connected me with Hugo, and gave some sense to the senseless situation that I was facing. My eldest daughter, Carla, was 5 years old at the time; she was breastfed for nearly 4 years, and for her it was also a healing process. I will never forget how she asked my mother to get the colostrum from the freezer to bring it to the hospital when they were coming to say goodbye to Hugo. She told my parents that her ‘mummy was keeping the magic milk for baby Hugo to get better’. Once at home after Hugo's funeral, she sat beside me as I was expressing, asked for milk and I offered her some in a cup and she enjoyed it. That special connection between our daughter and her brother is unique. We placed many objects in Hugo's coffin and Carla placed a bottle of breastmilk with him ‘to bring it to heaven when he was thirsty’. Normalising lactation and involving children is key for promoting a breastfeeding future.
In my case, being a bereaved breast milk donor had a hugely positive impact in my life. Looking back, it made those first few weeks after losing Hugo easier. I remember that time as being gentle, kind and lovable. I loved sitting in my bedroom flicking through his pictures and filling bottles of milk. It felt like a motherly instinct and love left flowing. I remember how I used to refer to milk drops as white tears, and how research then showed that this was used by other mothers as a descriptive term, demonstrating the emotional weight of this physiological phenomenon (British Association of Perinatal Medicine (BAPM), 2022).
Breastfeeding and lactation have been part of my life since I qualified as a midwife. I breastfed my children, and on each journey, I had challenges that, with the right support, were overcome with success. Breastfeeding, including latching a baby, pumping, using a supplemental system, feeding breast milk with a spoon, syringe, nasogastric tube or peg tube and placing drops of colostrum on the lips, is an integral part of the palliative care of a baby.
Feeling
In my previous breastfeeding journey, I experienced hypogalactia. This time, without stimulation, strong motherly instincts and love, as well as the cascade of oxytocin and prolactin, caused lactogenesis to become established quickly. I remember the last night we spent together, and the strong feeling of wanting to express colostrum in his mouth. It was nearly overwhelming, but now I understand the importance of breast milk for neonates and infants receiving end-of-life care. Breast milk can be used for mouth care, which can comfort the mother and help her to connect her with her baby (BAPM, 2022).
Bereaved mothers have few or no experiences with their baby. The lack of memories of the baby's existence can cause a particularly painful grieving process (Fernández-Medina et al, 2022). Donation of breast milk has been considered a component of grief rituals that can empower women in their grieving process (Oreg, 2020). Donating milk is a healing ritual in the grieving process that helps some women to identify as mothers, maintain the bond with the baby that died and diminish negative emotional feelings (Fernández-Medina et al, 2022). The extraction and donation ritual can also provide a mother with the time and emotional space necessary for both physical and psychological recuperation (Oreg, 2020).
Evaluation
Although suppressing lactation with cabergoline, a dopamine agonist used for hyperprolactinemia (BAPM, 2022), is a viable option for some mothers after perinatal loss, it did not feel right for me. Instead, I chose to allow my body to produce milk and express it, knowing that it could be donated to help other babies in need. My personal experience has given me a deeper understanding of the benefits of breast milk and the importance of offering informed lactation support to bereaved mothers. I also recognise the emotional weight of this physiological phenomenon and how it can be a powerful tool for the grieving process. Lactation is seen by many women as a material testimony to their maternal capacity and continuing bond with the child, as a form of remembrance and as a legacy, a gift to bequeath other infants to sustain their fragile lives (Waldby et al, 2022).
Analysis
Reflecting on my experience as both a midwife and a mother who suffered perinatal loss, I have gained a better understanding of the importance of offering sensitive and compassionate clinical and bereavement care. Providing information about lactation options following loss is an important aspect of care that can reduce women's stress and discomfort (Fernández-Medina et al, 2022). Through my experience, I also gained a deeper appreciation of the power of breast milk, not just as a source of nutrition but also as a tool for connection and comfort for both mother and baby. In a Spanish study by Fernández-Medina et al (2022), women perceived breast milk as a gift from their babies and a tool to navigate the difficult first few days following the loss. Mothers have described how their lactation was a visible recognition of their move into motherhood, and the act of donating gave them a tool to contemplate and process the loss of their child (Welborn, 2012).
There should be a greater awareness of breast milk donation following infant loss. There are 13 milk banks in the UK, one in Scotland and one human milk bank in Northern Ireland. The Western Trust milk bank opened in Northern Ireland in August 2000. In 2021, it processed a total donation of 2142 litres of donor expressed milk and provided approximately 1427 litres of breast milk to 27 neonatal units in hospitals across Ireland (Western Health and Care Trust, no date). It also reported an average of nine bereaved mother donation per year (Western Health and Care Trust, no date).
I am part of a group in Spain that works towards normalising milk donation following pregnancy loss and creating perinatal grief protocols. In 2001, the first human milk bank opened in Spain, and there are currently 16 milk banks across the country. It was reported that 77 bereaved mothers donated breastmilk in Spain in 2018, and there were 66 donations in 2022 (Rubio Vilchez, 2020). An interview with Olaya Rubio Vilchez, a Spanish bereaved mother and the writer of ‘Mothers too, food for the soul’ stated that between 2016 and the end of 2022, a total of 270 women donated breast milk following the loss of their babies (Rubio Vilchez, 2020).
It is crucial to avoid judgmental opinions about how a mother feels she would like to manage her body in the postpartum period. The grief response and choices around lactation following perinatal death are highly personal and varied; therefore, midwives should be mindful of this and sensitive in their presentation of the options available for lactation for bereaved mothers (Ward et al, 2023). It is possible that a midwife may be reluctant to offer this choice because of a lack of knowledge of milk donation processes and provision, but further research is needed to investigate this (Dickens, 2020). While there may be benefits associated with maintaining lactation following loss and with donation, more research is needed regarding all aspects of lactation management and bereaved parents' experiences. Midwives should also be aware that lactation after loss is generally an intensely privatised experience, with few opportunities for public expression or social acknowledgement (Waldby et al, 2022).
Conclusion
A lot of women that I met professionally mentioned how sad they felt, as no one had told them that breast milk donation was an option following perinatal death. Some bereaved women were leaking milk and suffered until milk was fully suppressed. It is important that bereaved mothers are offered choices in relation to lactation following loss. Bereaved mothers who wish to suppress lactation require information and supportive measures to manage their breast discomfort (McGuinness et al, 2014). Fernández-Medina et al (2022) stated that management of lactation after perinatal loss is often not included in a mother's care plan, and that therefore, pharmacological suppression was usually offered. It is important that mothers are provided with the information required to establish lactation following infant loss. I recognise the importance of facilitating informed choice around the subject of lactation following loss, as it is an integral part of bereavement care. For me personally, it was a truly empowering experience.
Breastfeeding and lactation are acts of love beyond limits that can provide comfort during a difficult time. The milk presents the parents' last physical connection to their baby, and through the process of weaning, they establish a new psychological relationship with their baby (Oreg, 2020). By increasing knowledge, providing anticipatory guidance and advocating for the inclusion of lactation management in the care plan for bereaved mothers, healthcare professionals can provide compassionate care and support to bereaved families to make informed decisions about lactation management following infant loss.
Action plan
Breastfeeding and lactation following perinatal loss are highly individualised experiences that require sensitive and empathetic care from healthcare professionals. To support bereaved mothers, midwives and other healthcare providers should be knowledgeable about the options available, including pharmacological and non-pharmacological suppression of milk, milk donation, and creating rituals or memories (for example, breast milk jewellery or soap) (Fernández-Medina et al, 2022).
It is essential to provide anticipatory guidance on lactation management during antenatal care, including what to expect, how to manage engorgement and an explanation of the options available for bereaved parents who find themselves in this challenging situation. Midwives should be prepared to support grieving parents and families on their unique journey and debrief following sad situations. Bereaved parents would particularly benefit from tailored information that provides sufficient instruction on ‘how to express’ that does not presume the presence of a living infant. (Carroll et al, 2020). Education and guidance for teams on lactation management after the death of a baby are also important, underpinned by a knowledge of the physiology of lactation (BAPM, 2022).
Key points
- It is essential to provide anticipatory guidance on lactation management to all bereaved parents.
- Parents can be supported to make lactation decisions that work for them following infant loss.
- Some mothers may wish to express their breast milk following infant loss and donate the milk to a human milk bank.
- Milk donation can be a positive factor in avoiding complicated grief, as it connects a bereaved mother with a deceased baby.
- Breast milk has benefits for the baby that receives the donation, but also for the bereaved mother, who can find comfort and a connection with her baby through this process.
CPD reflective questions
- How did reading this article impact you? Do you need to reach out to a bereavement midwife in your hospital for support?
- Do you ever consider milk donation when caring for a mother following a perinatal loss?
- What does anticipatory guidance mean, and what should it include?