Six years ago, I found myself in a hospital for an ultrasound. After experiencing a heartbreaking second trimester loss, I was desperate to confirm that my new pregnancy—my Rainbow Baby—was still thriving.
She was alive. But the news that followed was devastating. The doctor informed me that my baby was suffering from a condition known as “diffuse fetal hydrops,” which meant fluid was separating her skin from her body, and she also had heart defects. The prognosis? A complete and utter zero percent chance of survival.
Let that sink in for a moment: zero percent.
The doctor suggested I undergo an amniocentesis—not for her sake, since he deemed her survival impossible—but to prepare for any future pregnancies. I was left grappling with the weight of his words. Zero percent.
With my husband by my side, I went through with the amnio, which ultimately revealed the presence of an extra chromosome. Down syndrome.
By the time our baby girl was born, her diffuse fetal hydrops and heart issues had “miraculously” resolved. Moxie Eleanor Joy was born without any health concerns whatsoever.
Now I find myself questioning the doctor’s authority to declare “zero percent.” Why is it acceptable for him to make such a sweeping statement? Had I taken his advice and terminated the pregnancy, I would have ended the life of a perfectly healthy child. It’s baffling how, based on his own criteria of health, he was completely and utterly wrong.
How many other babies are lost to similar misjudgments? How many mothers are left in sorrow because they trusted that “zero percent” prognosis?
Why is it permissible for doctors to speak with such finality, particularly regarding conditions like Down syndrome? Why do we so often accept these misguided narratives, fueled by fear and a lack of understanding?
Every time my daughter achieves something new, I feel the urge to justify it—as if her mere existence requires an explanation. I marvel at her incredible spirit, her energy, her light, and I often think, “If only I had known this before she was born.”
Why do we rush to label children based on functionality? What does that even mean? Is it truly important for a life well lived? I can tell you this: “function” as a verb means to operate in a particular way, while as a noun, it refers to an activity or purpose inherent to a person or thing. Moxie functions in her unique way, with purpose and intent. She is exactly who she is meant to be.
Now at 5 years old, I struggle to express how much joy she brings to our family, how her creativity and curiosity enrich our lives. I thank the universe daily for this child—this child I almost let go of based on someone else’s prediction.
And even as I celebrate her existence, I want answers. Why can doctors declare “zero percent” without consequences? Why are we so quick to eliminate what we perceive as imperfect when it turns out to be so wonderfully perfect?
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Summary: This heartfelt article reflects on the author’s journey through a difficult pregnancy and the surprising outcome of her daughter’s health, while questioning the finality of medical prognoses and societal perceptions of disabilities.