Six years ago, I found myself in the hospital for an ultrasound. After enduring a heartbreaking second trimester miscarriage, I needed reassurance that my new pregnancy, my Rainbow Baby, was thriving. Thankfully, she was.
However, the ultrasound revealed a shocking diagnosis: my baby had diffuse fetal hydrops, a condition where fluid builds up in the body, along with heart defects. The doctor delivered the devastating news: she had a zero percent chance of survival.
Let that sink in: zero percent.
He suggested I undergo an amniocentesis, not to help her, but to prepare for the possibility of a similar situation in future pregnancies. The thought of “zero percent” weighed heavily on me.
Despite the bleak prognosis, I followed through with the amnio procedure, supported by my husband. The results indicated an extra chromosome—Down syndrome. Miraculously, by the time our daughter was born, the hydrops and heart issues had resolved entirely.
Mira Joy was born healthy and vibrant.
Why is it acceptable for a doctor to declare “zero percent”? How can he make such a definitive statement without accountability? Had I taken his advice to terminate the pregnancy, I would have lost a perfectly healthy child. This isn’t about the stigma of Down syndrome; it’s about the stark difference between medical predictions and reality.
I wonder how many babies are lost because someone believed a doctor’s “zero percent” chance. Why is there so much fear surrounding Down syndrome? Why do I feel compelled to justify every achievement my daughter makes, as if her existence needs validation?
Mira’s spirit radiates joy, energy, and laughter. Yet, even as I celebrate her, I find myself thinking, “If only I had known this during my pregnancy.” Some people assume she is “high functioning,” as if her beauty and vitality need to be justified by a label.
What does “functioning” even mean? Does it truly matter in the grand scheme of life?
“Function” has two meanings: as a verb, it means to operate properly; as a noun, it’s defined as an activity naturally intended for someone. Mira operates in her unique way—perhaps unconventional, but undeniably with purpose. She is precisely who she was meant to be.
Now, at 5 years old, Mira continues to illuminate our lives. I want to express how her presence enriches our family, how her creativity and curiosity spark joy. I thank the universe every day for her, the child I might have chosen to end if I had believed the doctors.
As I celebrate her, I’m left with questions. Why can doctors say “zero percent” without consequences? Why is our society so eager to eliminate what we fear might be imperfect, when it turns out to be perfect all along?
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In summary, my story is a testament to the unpredictability of life and the importance of trusting our instincts over a doctor’s bleak predictions. Mira is a reminder that the journey can be beautiful, even when faced with uncertainty.