Parenting
Six years ago, I found myself in a hospital for an ultrasound. After experiencing a second-trimester miscarriage, I desperately needed to confirm that the Rainbow Baby I was carrying was alive. The good news was that she was. However, the doctor informed me that she had a condition known as “diffuse fetal hydrops,” which caused fluid to separate her skin from her body, along with heart defects. He delivered the shocking news: she had a zero percent chance of survival.
Let that sink in: zero percent.
He insisted on an amniocentesis—not because it would help her, but so that I could understand the situation for future pregnancies. I felt a knot in my stomach. Zero percent.
With my husband by my side, I returned to the hospital for the procedure, which ultimately revealed an extra chromosome—Down syndrome. By the time our daughter was born, her hydrops had “miraculously” resolved, as had her heart defects.
Sophie Jane was born completely healthy.
I find myself questioning why it’s acceptable for a doctor to deliver such a definitive statement as “zero percent.” Why is there no accountability when a declaration like this could lead to the termination of a perfectly healthy child? How many other babies have been lost because a physician said “zero percent”?
I wonder why doctors, or anyone for that matter, feel entitled to make sweeping statements about children with Down syndrome. Why is there a tendency to project fear and ignorance onto new mothers?
I still feel compelled to justify every milestone my daughter reaches, as if her very existence is not worthy of celebration. For every wonderful thing she does, I feel an urge to explain it, as if it needs validation.
Sophie radiates a spirit filled with joy and energy, and even as I admire her, I think, “If only I had known this during my pregnancy.” People often conclude that she is “high functioning,” as if her beauty and spirit must somehow be justified through conventional standards of functioning.
What does “functioning” even mean? Is it truly important for a fulfilling life? To function means to operate in a specific way, but Sophie moves through life with a purpose that is uniquely her own. She is precisely who she was meant to be.
Now at five years old, I find it challenging to express everything I want to say about her without quantifying or justifying it. I want to share how she brightens our family, how her creativity and curiosity enhance our lives. I am grateful every day for this child, who I might have terminated had I listened to the doctors.
While I celebrate her existence, I still seek answers. Why can doctors say “zero percent” without facing repercussions? Why are we so quick to eliminate what we perceive as imperfect when it has turned out to be so perfect?
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Summary:
This article recounts a mother’s experience with a dire prognosis during pregnancy and her daughter’s miraculous health outcome. It raises critical questions about medical accountability and societal perceptions of children with disabilities, emphasizing the need for compassion and understanding in the face of uncertainty.
Keyphrase: zero percent chance of survival
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