Pregnancy and early motherhood with heart failure – it’s complicated…

A black-and-white early-pregnancy sonograph with a wasp's nest superimposed in sepia tones. Wasps are emerging from a cluster/ball of cells.
Created (by me) by editing the following two images: Sonograph – Shypoetess, CC BY-SA 4.0 https://creativecommons.org/licenses/by-sa/4.0, via Wikimedia Commons & Wasp Nest – Alexander Brelsford on Flickr

It’s been a while since I shared any of my own *actual* writing. I wrote this piece of creative non-fiction in early 2020. I’ve read versions of it at various events but have never published it because…being a mum with pregnancy-related heart failure is, as I said in the post’s title, complicated.

The initial scene in this piece took place when my daughter was about two years old, I think, which was around the time my health was at its worst and the words “heart transplant” were being bandied about with increasing regularity. The hospital scene I describe took place less than one day after my heart failure was discovered and less than one day before my daughter was delivered, nine weeks before her due date. Hopefully this context gives you some idea of how difficult and emotionally charged these two periods of my life were.

I’m still uncertain whether sharing this publicly is the right thing to do (friends who are parents say no; friends who are not parents say yes) but I’ve tried and failed to get others to publish it anonymously and I think my experiences of pregnancy and early motherhood would have been easier to navigate if I had been aware of someone – of anyone – going through something similar.

“Heart disease is the biggest single cause of maternal deaths in the UK,” says Dr Sara Thorne, a Consultant Cardiologist at Queen Elizabeth Hospital Birmingham [Source – British Heart Foundation] and yet it’s so hard to find stories about pregnancy-related heart conditions in the public domain. My heart did not feature on my lengthy list of pregnancy worries at all, hence the horrible shock of it becoming an imminent worry so far through the pregnancy. With no prior knowledge or awareness of these issues, coming to terms with my diagnosis while learning to be a mum was nigh-on impossible. Shout-out to the friends, family, and professionals who helped me to do that.

Anyone who knows me at all knows that I love and adore my daughter beyond anything else. She and I are so intensely and inextricably entwined. She brings me so much joy (and incredible frustration) and we are both lucky and grateful to have survived our difficult beginnings, to have been able to grow and to know one another. If I had my time again, I wouldn’t change a thing. Je ne regrette rien. Because she’s worth it. Etc.

But representation and visibility are so important and that’s why, putting my money where my mouth is, I’m finally sharing this very personal piece. I am reminding myself that my daughter knows, and will always know, that I never stopped loving her, from the very moment she set up temporary home in my body. I just never stopped not wanting to die either.

Like I said, it’s complicated.


The Host

I’m sitting with my daughter in the middle of the grass, in the middle of the park, in the middle of the city. The sun has brought out the crowds, as much as the sun can on a term-time Tuesday afternoon, but my daughter is unaware of other people, her attention oscillating between some point on my face and the struggle ensuing among the grass. Still reasonably fearless, her one experience of bee-sting a non-verbal memory of an anomaly rather than an event she expects to be repeated, she reaches out towards the tussling insects, turning towards me as she does so to assess the impact of her urgent expression, reflected back at her from the lenses of my glasses.

My eyes swivel sideways, drawn along the chubby length of her arm to her ever-pointing finger and beyond, to the scene unfolding in miniature beside us. A wasp has grabbed a beetle from behind. The beetle’s back legs cling to the grass while its front legs wave impotently, attempting to dislodge the wasp’s thrusting abdomen from the back of its head. The wasp, of its own accord, finally lets go, the beetle pausing momentarily before continuing, seemingly unperturbed, along its intended path.

My daughter looks questioningly at me as I try to explain what I think we have witnessed: that the wasp was laying eggs inside the beetle; that the beetle is ignorant of the new life inside it, even though that life is about to drain (is already draining) the beetle’s resources; that the beetle’s existence has been transformed, its only purpose now to sustain the life of its intruders.

My daughter smiles uncertainly as our thoughts temporarily diverge and I remember when my own abdomen hosted a visitor so demanding that I was very nearly consumed – would have been consumed – had the ultrasound remained focused on the larva rather than, one day, turning its attention to the host.

***

My heart, in its on-screen debut the evening before, had been exposed: swollen and distorted under the strain of pregnancy, it was deemed too weak to support the metamorphosis to its conclusion. The baby, still in its larval state, was to be removed, completing its prenatal development in an artificial incubator.

Shifting uncomfortably under a web of monitors and catheters while the baby squirmed inside me, I turned to watch my partner on the other side of the glass, asking questions he had never asked of me – questions the consultant cardiologist answered with a sideways glance and a shake of her head. I tried to decipher the message contained in the movement of her lips, but the nurse, patting my hand, drew my eyes away from their discussion of my death to show me her vision of my life.

“The baby will be fine in the end. I just know one day you’ll be sat on a bench in the park, watching the baby and its dad running around. You might not be able to join in, but you’ll be fine and the baby will be fine, and it will be lovely, watching them playing.”

“I know I’m supposed to be worried about the baby,” I said, “but I’m scared about what’s going to happen to me.”

The consultant re-entered the room. “Is there anything else you want to ask?”

“She’s worried she won’t be well enough to look after her baby properly,” chirped the nurse, smiling conspiratorially in my direction.

***

The beetle gone, I kneel on the grass, mustering the energy to tuck our belongings under the pushchair as my daughter leans against me. She nuzzles her head under my chin, the hard skull beneath her downy hair digging uncomfortably into my jawbone.

I glance sideways at adults relaxing on park benches and I think about decapitated beetles, their heads mask-like above the wriggling legs of wasps their bodies hatched.


This month the blog has a focus on all things Friends & Family, tying in with the theme of the zine. Being a parent to a young child/children while living with a heart condition comes with a unique set of physical and emotional challenges. I’m certain and sad that there are vital stories about these experiences going untold. If you fancy sharing your thoughts on being a parent with a heart condition, or any other aspect of Friends & Family, perhaps you would consider contributing a haiku to this month’s zine? Full details available here.

3 comments

  1. This is such a powerful piece, Laura. I am so glad you are sharing it. No matter how much we adore our children, society wants mothers to be selfless, without getting the fact that we can love without having to sacrifice ourselves in the process. In your introduction, the dialogue with the nurse and her response are outrageous. The things people say when trying to be comforting! From the idea that you will be happy just because your husband and child are, even if you are unable to play and run, for example, or that your only concern is to take care of somebody else.
    In the middle of intermiten cardiac arrest I did think of my daughters as an anchor for survival, but that is a different story. I believe it was the disguise my body grabbed in its will to stay alive.
    Please, keep sharing your stories.

    Liked by 1 person

    • Thank you so much for your feedback, Margarita. The comments by the nurse (in reality it was two separate nurses who I’ve combined for the simplicity of retelling) were the aspect I set out to write about, as the horror of those conversations stayed with me for a long time. As you said, the reduction of my life to someone who would sit and watch from a bench (and this presented as a positive outcome) was a massive dismissal of my self, my hopes and my expectations, and the well-meant concealing of my confession that I was scared for myself made me feel like the worst and most unfit monster of a mother-to-be.

      Like you, I’ve used my daughter as a source of courage and determination (I like your description of the disguise your body grabbed – food for thought there) and have made many decisions about my own care with her welfare in mind. But I’ve also never stopped thinking of myself throughout – my needs and wants. There are so many expectations put onto new mothers and that they will be self-sacrificing is one of them. So hard to advocate for your own welfare when the expectation is that you will (and should) care only about your child.

      Like

  2. […] The good thing about getting a new phone just before you get COVID-19 is that you have something to play with once you start feeling able to see straight again. As I recovered, I ended up using my phone (from my bed mostly!) to make this very short film version of the creative non-fiction piece I shared on the blog recently. […]

    Like

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