Birth and death

Mapping dying and death on a perinatal map

Neve, age 4, July 2017. Painted in Delft Blue from The Stoneground Paint Company watercolour paints.

I don’t know when I first realised that birth and death were akin. Possibly, it began as a subconscious impression, an inkling of familiarity, of comfort. In time, it became an unmistakable way of thinking, a tangible lens through which to understand this new uncharted-by-us world. 

In the beginning, when I was catapulted from the perinatal world where I worked into the cancer and palliative care world, I lost my grounding, my scripts for dealing with our new, ever changing reality. I had no map, no guidebook. I knew I needed to look to my child, to follow her lead, as I had always aimed to do with my children. But she was also lost and overwhelmed. She didn’t follow any of the textbooks. I often felt that we didn’t quite belong anywhere. 

Without a sense of belonging, how could we know where to go, when to stand up and say something isn’t right, and when to accept that things are hard because they are hard? How could I find a community, without knowing where we belonged?

It was as soon as I started to place our experiences, which all felt loose and chaotic, onto the points of the perinatal map that I began to find clarity. I might not know the specifics of dying and death but I did know pregnancy, birth and babies. I had spent almost a decade and a half in this world, having babies, volunteering as a breastfeeding counsellor and working as a lactation consultant. If I could use my knowledge of birth to understand death, maybe we weren’t as lost and disorientated as I felt?

My perinatal map was well structured, its points and its order clear and familiar. Pregnancy, labour, birth, time after birth. It was a revelation to see that illness, end of life, death and time after death followed similar patterns. There was a map, I just hadn’t realised it.

As the months and then years went on, these similarities revealed themselves again and again. It wasn’t just echos of birth, as I contemplated death; it went beyond this. It became clear that Neve would die from her cancer, two and a half years before she died; this period of terminal illness so often paralleled that of pregnancy. As we moved forward, into her end of life phase, I began to recognise my experiences of being in labour. And then she died and a part of me felt like I had just given birth. Much about the days and weeks after Neve’s death mirrored the days and weeks after her birth. As time has continued to move forward, into the bereavement phase, again, I am conscious of how much I am reminded of the postpartum phase, of that time with a baby, after the very early days. 

Pencil sketches of Neve, age 4 and fabric

What is it that links a birth and a death? Are they mirror images of each other? Or perhaps they are ends of a string, a circular string? Some strings are long, others are short and some begin and end simultaneously, but ultimately, they all begin with a birth and end with a death. I say all, but in fact, for some, death comes before birth.

The dictionary informs me that these are antonyms, opposing words. Does the dictionary really understand that birth and death are both transitions, powerful transitions, transitions that bookend lives? A transition in and a transition out. Facing them, waiting for them is to enter into a liminal space, to accept the uncertainty that is innate in both birth and death. Accepting this uncertainty isn’t simple, but there are few other options. 

Nevertheless, whilst there is vulnerability and precariousness, there is also structure and order. Most deaths are in fact quiet, simple affairs. The body knows what to do. Yes, things don’t always go to plan. However, there is a physiological process to both birth and death. Just as an experienced midwife often knows exactly what is happening and what to expect next, an experienced palliative care doctor or nurse also recognises the steps of dying and death. 

I found this to be incredibly comforting knowledge. Things were not as chaotic and uncertain as they felt. Others recognised the path that Neve was on, even if I didn’t. Yes, you might point out, Neve didn’t actually follow this path quite as expected. But in a way, that felt no different to a birth that doesn’t go to plan but still results in a birth. 

What we needed and thankfully had, were very experienced doctors and nurses, who had seen enough other dying children that they could still recognise aspects of Neve’s journey, despite the uncertainty. There was a map, albeit one from the other end of life, and there were experienced guides on this journey. These guides and the physical and emotional spaces they offered us became a lifeline.

I remember my first visit to our hospice; I felt comfort and ease, a familiarity. I could have been in a perinatal space. We had found ourselves another home. 

Communication and relationships were the bedrock of these spaces. Understanding physiology and the strategic use of medicine and medical intervention to support people underpinned every conversation, every decision that was made. These were people and places who treated and cared for children, not diseases. 

On this solid foundation, we were cared for and guided by carers, who could have been doulas. Neve’s nurses brought vast knowledge and were with us; they were our midwives and consultant midwives. Finally, her doctors brought additional expertise, particularly when things were complex, similar to obstetricians and consultant midwives at the beginning of life. And, often unseen but of no less importance, were all the others who made up these teams, in both palliative and perinatal care.

Paint sketches using Stoneground Paint company paints.

It was these guides and this map that held me, as I struggled to bring sense and order to the distressing experiences that we were facing. They held and contained me, as I held and contained my broken-hearted child. And then, in the end, after Neve died, it was the love and containment, the food and the baking, that supported us to get up each day, to grieve and to continue. The echoes of the time after birth, when friends and family, professionals and community, held us, fed us, supported us to take tentative steps forward in the chaotic and exhausting world of a newborn, the echoes were so deep and so striking.

Please join me over the coming weeks, as I delve deeper into the links and connections between birth and death and the structure and clarity that this brought me.