I once believed in a world where every child is born healthy, people pass away in their old age, and grief is a manageable journey. However, everything changed on a bright Saturday morning in the summer of 2018 when I welcomed twin girls into the world — one alive and one who had passed away. My twin A succumbed to a mix of placental insufficiency, severe intrauterine growth restriction (IUGR), and ultimately, an umbilical blood clot at just 24 weeks of gestation. Her sister, Baby B, weighed less than a pound and was fighting for her life in the NICU, facing the same medical challenges. In the midst of such shock, my husband and I chose to stifle our grief, especially with the uncertainty surrounding twin B’s survival. It wasn’t until nearly two years later, after an extensive NICU stay and the eventual stabilization of our surviving daughter, that we began to process A’s passing.
Terms like “pregnancy loss,” “fetal demise,” and “miscarriage” strip away the humanity from a profoundly personal experience. Approximately 25% of us have faced such heartbreaking circumstances, yet our stories often remain untold, and the existence of our children is overlooked. These phrases imply blame on the mother while reducing the life of the child to mere medical terminology. As bereaved parents, we frequently hear not to discuss our children to spare others’ discomfort, or we feel ashamed for wanting to share a significant part of our lives, leading many to stay silent rather than mention their names.
Since A’s passing, conversations with family, friends, and even strangers have been filled with clichés. For almost a year, our surviving twin fought serious illness, and many around us expected us to concentrate solely on her, insisting that “at least we still have one.” I braced myself for each interaction, anticipating questions about our living child being a twin. Not only was I dealing with my grief, but I also had to prepare for the reactions of those who inquired.
Too often, I’ve been met with horrified looks when asked the question every grieving parent dreads: “How many children do you have?” When I respond honestly, “I have twin girls; Lily is two, and her sister passed away before birth,” I wonder why I should have to omit one of my children. She is just as much my daughter as her living sister, and it is my honor to remember her at every opportunity. Yet, these exchanges can be emotionally draining — I wish for a world where mentioning my baby doesn’t elicit discomfort.
When bereaved parents share details, anecdotes, or images of our children, we offer a fragment of our soul. It is a privilege for you to know them, and it is essential to recognize that passing judgment on our choices is unwarranted when you have not experienced our journey. Here are some ways to support us when we open our hearts:
- Acknowledge your uncertainty. Let us know you want to help but aren’t sure how. It’s comforting to understand that you’re willing to navigate this path with us.
- Ask about our preferred language. There are various ways to describe infant death, and each bereaved parent may have different preferences. While some may embrace titles like “angel moms,” I identify as a “dead baby mom” since I do not hold spiritual beliefs and do not view my daughter as an angel. I would rather hear something that doesn’t align with my preferences than silence — taking the time to ask shows your commitment to being a supportive presence.
- Say their name. Hearing my daughter’s name spoken brings me immense joy. When she is recognized in conversations or messages, I feel reassured that you are thinking of her too.
It is our collective responsibility as a society that often shies away from death to learn from those who have experienced this heartbreak. My daughter’s passing has profoundly shaped my identity and perspective on life — I refuse to hide her away or make her story less impactful. Instead, I will continue to say her name, share her legacy, and strive to change the stigma surrounding infant loss.
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