I used to live in a world where all babies are born alive, people die when they’re very old, and mourning was finite. And then, on a sunny Saturday morning in the summer of 2018, I gave birth to twin girls — one alive, and one dead. My twin A died from a combination of placental insufficiency, severe IUGR, and ultimately, an umbilical blood clot. She was 24 weeks gestation. Her twin, Baby B, weighed barely one pound and was holding on by a thread in the NICU as she suffered the same diagnoses. My husband and I were in such an utter state of shock, and coupled with the uncertainty of twin B’s survival, we suppressed every ounce of grief inside of us. It wasn’t until almost two years later, after an 8 month NICU stay and the eventual stabilization of prolonged medical trauma with our survivor that we are now finally able to process A’s death.
Medical terms including pregnancy loss, fetal demise, and miscarriage dehumanize a very human experience — in fact, 25% of us have endured these heartbreaking events but our stories are left unspoken, the existence of our babies ignored. They imply fault on the part of the mother while the life of the child diminished to medical jargon instead of the human that they are. We, bereaved parents, are either explicitly told not to talk about our children so as not to make others uncomfortable, or we are made to feel ashamed for sharing a very personal and meaningful part of our lives — so much so that many would rather stay silent than speak their names.
Since A’s death our conversations with family, friends, and strangers have been riddled with platitudes. For just shy of a year, our surviving twin was seriously ill. The expectation dictated by many around us was that we focus all of our energy on her because “at least we still have one.” I found myself bracing for every interaction when it may come up that our living child is a twin — not only was I deep in the throes of my own grief, I now had to anticipate and manage the reactions of those who asked.
One too many times I’ve received mortified stares in response to the question every bereaved parent dreads, “how many children do you have?” I answer honestly, “I have twin girls, Lily is two and her sister died before birth.” I wouldn’t expect you to omit one of your children when answering that question, why is it expected of me? She is as much my baby as her living sister, and it is my duty and honor to remember her with every opportunity I have. But, these exchanges are emotionally exhausting — I would love to live in a world where I’m not met with a wince when I acknowledge my baby. Instead, I answer and then hold my breath as I wait for a response.
When we, bereaved parents, share with you information, a story, or a picture of our child, we are sharing a piece of our soul. It is your privilege to know them, and more so your privilege to pass judgement on our choices when you have never walked in our shoes. When we open our hearts to you, instead of silence, here are some ways that you can support us:
Acknowledge that you don’t know what to say. Tell us that you want to offer support but don’t know where to start. We’re learning as we go as well — it’s a relief to know that you’re willing to join us as we navigate life without our child.
Ask about our language preferences. There are so many different ways to describe infant death, and no two bereaved parents have the same preferences. Some women like to be called “angel moms,” some include religion or spirituality when speaking of their child. I call myself a “dead baby mom” as I am not spiritual or religious and do not consider my daughter an angel. That being said, I’d much rather hear something that doesn’t jive with my preferences than hear nothing at all — taking the time to ask and learn solidifies your role as a support person.
Say his/her name. There is nothing that I love more than hearing someone speak about my daughter by name. When she is included on cards, in texts, and in conversations, I know that you are thinking of her too.
It is our collective job, as members of a society that shies away from death, to learn from those who have experienced this heartbreak. My daughter’s death has shaped who I am as a person and how I approach the world — I will not keep her hidden away or make her story more palatable. Instead, I will say her name, share her life, and work to change the stigma of silence and discomfort around infant death.
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