Pregnancy and terminal illness
Intersections of birth and death
Before I begin, it feels important to say that I am writing about my experiences, my reality. There is no one way to birth, to live or to die. Despite the heartbreak of watching my child suffer and die, I am very aware that my life is easier than that of many others around the world. I can’t possibly speak for everybody and am in no way trying to do so. I do however hope that there are aspects of our story that might resonate with you, even if not everything does. I urge you to read, to take what works for you and to leave the rest behind.
It is hard to quite imagine how my experience of the time of Neve’s terminal illness could possibly be in any way akin to the time of my pregnancy with Neve. And yet, somehow, the final months and years of her life regularly evoked the period before her birth. The various parallels of pregnancy appeared both in real time and now, in hindsight, they continue to come to me.
Sharing news
Early on in Neve’s illness, I remember reflecting back to how and when people share news of a pregnancy. So often, this information is kept quiet and private, at least initially. I remember doing exactly this, in early pregnancy. After all, many pregnancies don’t continue, so waiting seemed to make sense. What if I shared news of a pregnancy but then subsequently had a miscarriage? The idea of then needing to go back and share the sad news felt insurmountable. Surely, it was easier to keep it to myself, at least for now?
In time, I grew to understand that early pregnancy and miscarriage can be times when help is often intensely needed. If the people around don’t know what is happening, how can they offer their support, whether that be food or company, practical help or emotional holding?
I needed to allow myself to be vulnerable, in front of others, both in pregnancy and in serious illness. I needed to find the words to communicate our reality, including the fear and the agony of accepting a terminal illness. I needed to accept that there was no way to do this without causing pain to others. This was a heavy sorrow, I could not change that. But much as I didn’t want to burden others, I had to see that their ability to support me would help them carry their own burden.
Yes, they might have heard that my child was unwell, but did they really understand that she would die from her cancer? Did they appreciate the traumas that she and I were facing, on a daily basis? How could they? I could not have imagined what it would be like to watch a child suffer, before I was there and it was my child. If we didn’t let them see into our lives, how could they possibly imagine what she was going through? If they didn’t know, how could they support us?
Making the decision to be open, to some extent, with what was going on, allowed people to understand, a little bit, what was happening within the walls of our house. This was all done with caution. Protecting Neve’s dignity was a guiding light at all times. But it turned out that there was a way, a middle ground, to tread carefully, to bring people in whilst ensuring that Neve was protected in everything we did.
Relationships
Before I faced birth and before I faced death, I may very well have thought that these were medical matters. Medicine can and does play a hugely valuable role in our transitions in and out of life. But both these transitions were strengthened by the relationships that we built with people. Understanding that interpersonal connections are the bedrocks of birth and death brought me clarity and courage.
During my pregnancies, it was the relationships that I built that became the foundation of my preparation, my clarity. During my pregnancies, my midwives and I grew to know each other and to understand each other. And in echoes of that relationship building, this time it was Neve’s health care professionals, her carers, her doctors, her nurses, her people who we built connections with. Just like my midwife knew what was normal for me and how best to support me, Neve’s people got to know her, what was normal for her, and how best to support her. Having this element of trust in her people meant that when there was a crisis, we could focus on what was needed in the moment, rather than trying to get to know each other and what might be wanted. Words were often superfluous when connections were strong.
Planning
Much of the final months of my pregnancy were spent pondering birth and birth plans. What did it all mean? What felt right for me and my baby and my family? What did I really have control over? I had always found the creation of a birth plan to be helpful, partly as a way to explore what might happen and also as a way to think about what my hopes and wishes were. I needed to be able to explore options, make a plan and then, perhaps most importantly, accept that I did not have control over birth. But a lack of control didn’t mean a lack of influence.
Very unexpectedly, in my fourth pregnancy my waters broke a month early. It become apparent that my hopes and plans of a home birth in a month’s time were not realistic. Accepting that these hopes were not practical and that my time and energy could be better used elsewhere was a gift. Instead, I needed to explore realistic wishes and create new plans, which shifted the focus away from home and towards hospital. This was now my initial plan but thinking the options through and knowing what to expect meant that I could then walk into the hospital and accept that I could not control the process. I had hoped for what felt best for me and my baby but I was now planning for the rest, finding ways to retain some of my hopes and even finding new hopes.
Little did I know that making birth plans for my fourth and last pregnancy would not be the last time I would need to make a plan for a life changing transition for a child of mine. I was struck by the strong echoes of creating birth plans, as we created Neve’s Advance Care Plans (ACP). I came to think of this as a living and dying well plan.
It was important to put thought into the details of Neve’s time left with us and into decisions that we might need to make, in the times to come. Neve might seem relatively well now, but she was not always going to be so well. We already had experience of having to make decisions in emergency, life-threatening situations, without any preparation. I didn’t want that again. Decisions would need to be tailored to her, to ensure that they were always being made with her best interests at heart.
Going into it, I knew that there was so often a lot of fear and reluctance, both from health care professionals and from families, about creating ACPs. I am grateful that I recognised that a living and dying well plan was just an echo of a birth plan. The latter had brought comfort and reassurance in the past. Could embracing the ACP planning process now be exactly what Neve needed me to do? The idea of exploring options, making a plan and accepting that ultimately we can’t control birth or death felt like second nature.
To do this, I had to push through those residual superstitious feelings, the taboos that seem to permeate conversations about birth or death. We don’t want to cause a birth to stray too close to death, to cause a premature death or any death, for that matter. I sometimes wondered whether it was ok to talk about Neve dying, or whether I might jinx something. Did voicing my thoughts and feelings mean she might die sooner? Or, even worse, did this mean that I wanted her to die, if I spoke about her imminent death out loud? Creating her ACP forced me to face these fears, to face reality. In order to safeguard Neve’s ability to die as safely as possible, I had to hear what might come and to talk about what was important to her.
Nesting
Finally, as Neve’s time with us waned and we approached the end of her life, I was reminded again and again of the final weeks of her pregnancy. Each time she deteriorated, I noticed that I took to nesting. My body seemed to know that focusing inwards, creating a space, and curating this space was important, as I prepared to say goodbye. So similar to my instincts, when I prepared to welcome baby Neve, just over a decade ago. I was cooking and baking, I was tidying, I was organising. It was as if my body knew that soon I would have a baby or I would be grieving. Now was the time to create order. Possibly it was a way to keep busy, as birth and death began to feel more imminent. A way to be emotionally present but still active.
Baking with Deb
In an odd coincidence, it was an author who accompanied me on my final weeks as I prepared both for Neve’s transition into my arms and then as I prepared for her transition out of my arms. Just before Neve was born, a beloved cookbook blogger, Deb Perelman, published her first cook, the Smitten Kitchen cookbook. I baked my way through those final weeks, making raspberry ricotta scones, gingerbread dutch baby pancakes, almond date cereal bars and nectarine poppy seed muffins. This time, in a curious twist of fate, her third cookbook had just been published. And so I baked my way through Neve’s final time with us, with Deb again at my side. As the end of her life neared, I baked sour cream and flaky cheddar biscuits, peanut butter, oat, and jam bars, apple butterscotch crisp and carrot cake with brown butter and no clutter. I do think that Neve would approve of both a beginning and an ending, her transitions in and out, shaped and imbued with cooking and baking.
Thank you Emily, for so beautifully bringing birth and death together. The way they touch, their similarities.. your words resonate so deeply in my heart and womb. Your curiosity is intriguing me deeply, so much resonance with how I look at birth & death, the cycles.
Thank you so much for bringing your experiences onto these pages. I’ve only read this post of yours, but I for sure will come back to read others💗
And!! Your artwork of Neve is magnificent, thank you for sharing such vulnerable images with us. Your words and those artworks.. magic! I can feel a mother’s love through them.