I once inhabited a world where every baby arrives into the world alive, the elderly pass away peacefully, and grief is a defined journey. However, everything changed on a bright Saturday morning in the summer of 2018 when I welcomed twin daughters into my life—one vibrant and one lifeless. Twin A succumbed to placental insufficiency, severe IUGR, and ultimately, an umbilical blood clot at just 24 weeks gestation. Her sister, Twin B, was barely a pound and fighting for her life in the NICU, facing the same dire circumstances. My husband and I were engulfed in disbelief, and with Twin B’s uncertain future, we buried our grief deep within. It wasn’t until nearly two years later, after an exhausting 8-month NICU stay and the stabilization of our surviving daughter, that we began to process the loss of Twin A.
The medical terminology surrounding infant loss—like pregnancy loss, fetal demise, and miscarriage—strips away the humanity of a profoundly human experience. Shockingly, 25% of individuals face such heartbreaking events, yet their stories often remain untold, and the existence of their children is overlooked. These terms can imply blame on the mother while reducing the child to mere clinical definitions rather than honoring them as individuals. Bereaved parents frequently find themselves discouraged from discussing their children to avoid discomfort for others, or they feel shamed for sharing such a personal and significant part of their lives. This pressure often leads many to remain silent instead of acknowledging their beloved children.
Since Twin A’s passing, conversations with family, friends, and even strangers have been filled with well-meaning but often empty platitudes. For nearly a year, our surviving twin was gravely ill. Many around us expected us to channel all our energy into her because, after all, “at least we have one.” I braced myself for the inevitable question about how many children we have, knowing that I would have to navigate my own grief while also managing the reactions of others.
Too often, I’ve been met with horrified expressions after answering the dreaded question: “How many children do you have?” My honest response is, “I have twin daughters, Lily is two and her sister died before birth.” I wouldn’t expect anyone to omit their living child from such a question—so why is it presumed of me? Twin A is just as much my baby as her sister, and I feel it’s both my duty and privilege to remember her whenever the opportunity arises. These conversations can be emotionally draining; I wish for a world where my daughter’s name wouldn’t elicit discomfort.
When bereaved parents share stories or pictures of our children, we unveil a piece of our hearts. It is a privilege for you to know them, and it’s important to recognize that passing judgment on our choices, without having walked in our shoes, is not your place. Here are some ways you can support us:
- Acknowledge Uncertainty: If you’re unsure of what to say, admit it. Let us know you want to help but don’t know how. We’re learning too, and it’s comforting to know you’re willing to join us as we navigate a world without our child.
- Inquire About Language Preferences: There are multiple ways to discuss infant death, and each bereaved parent may have different preferences. Some may embrace titles like “angel moms,” while others, like me, prefer “dead baby mom,” as I don’t view my daughter through a spiritual lens. It’s better to ask what terms resonate with us than to remain silent.
- Say Their Name: Hearing my daughter’s name spoken brings me immense joy. When she’s mentioned in cards, texts, or conversations, I feel her presence alongside you.
As a society that often shies away from discussions about death, it’s crucial for us to learn from those who have faced such profound grief. My daughter’s passing has shaped who I am and my perspective on life. I refuse to hide her story or make it more palatable for others. Instead, I will proudly say her name, share her life, and work to dismantle the stigma surrounding infant loss.
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Summary
This article discusses the emotional challenges and societal stigma faced by bereaved parents, particularly those who have experienced the loss of a child during pregnancy. The author advocates for acknowledging these children and encourages open, compassionate conversations about infant loss.