Please Don’t Refer to My Daughter as a ‘Pregnancy Loss’

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I used to believe that all babies were born alive, that people only die in their old age, and that mourning had a defined end. Then, on a bright Saturday morning in the summer of 2018, I gave birth to twin girls—one alive and one gone. My twin A passed away due to a mix of placental insufficiency, severe intrauterine growth restriction (IUGR), and ultimately, an umbilical blood clot. She was just 24 weeks old. Her twin, Baby B, weighed less than a pound and was barely clinging to life in the NICU with the same conditions. My husband and I were completely overwhelmed, and with the uncertainty surrounding the survival of our surviving twin, we buried our grief deep inside. It wasn’t until nearly two years later, after an eight-month NICU stay and the stabilization of our surviving baby, that we could truly begin to process A’s death.

Terms like pregnancy loss, fetal demise, and miscarriage strip away the humanity from a profoundly human experience—one that 25% of us have faced. Our stories remain unspoken, and the existence of our babies is often overlooked. These phrases suggest the mother is at fault, reducing the child to mere medical terminology rather than honoring their existence. Many bereaved parents are told not to mention their children to avoid discomfort for others or feel ashamed for sharing such a significant part of their lives, making it easier to remain silent than to speak their names.

Since A’s passing, conversations with family, friends, and even strangers have been filled with clichés. For nearly a year, our surviving twin was critically ill. Many around us suggested we focus solely on her because “at least we have one.” I braced myself for every interaction when the topic of twins arose—not only was I grieving deeply, but I also had to manage the reactions of those who inquired.

Countless times, I’ve faced horrified expressions when asked the dreaded question, “How many children do you have?” I reply honestly, “I have twin girls; Lily is two, and her sister died before birth.” I wouldn’t expect you to leave out one of your children when answering that question, so why should I? A is just as much my baby as her living sister, and it is my privilege to remember her whenever I can. However, these interactions are emotionally draining—I long for a world where I’m not met with discomfort when I acknowledge my baby.

When bereaved parents share stories or photos of our children, we are revealing a piece of our hearts. It is your honor to know them, and more importantly, you should refrain from judging our choices when you haven’t walked in our shoes. When we open up to you, here are ways you can support us:

1. Recognize that you may not know what to say. Express that you want to help but aren’t sure how to begin. We’re navigating this journey too—it’s comforting to know you’re willing to walk alongside us as we cope with our loss.
2. Inquire about our language preferences. There are numerous ways to describe infant death, and each bereaved parent may have different preferences. Some prefer terms like “angel moms,” while I identify as a “dead baby mom,” as I do not subscribe to a spiritual or religious view. I’d much rather hear something that might not fully align with my preferences than nothing at all—taking the time to ask shows your commitment to being supportive.
3. Say their name. There’s nothing more comforting than hearing someone speak my daughter’s name. When she’s included in cards, texts, and conversations, it reassures me that you are thinking of her as well.

As a society that often shies away from discussions about death, it is vital to learn from those who have experienced such profound heartache. My daughter’s death has shaped my identity and worldview—I refuse to hide her story or make it easier for others to digest. I will continue to say her name, share her life, and work towards breaking the silence and stigma surrounding infant death.

For additional insights, check out this post on home insemination. If you’re looking for expert advice on home insemination, Make a Mom is a great resource. Similarly, Kindbody offers excellent information on pregnancy and home insemination.