Parenting
They Told Me My Child Wouldn’t Survive: A Journey of Hope by Jessica Lane
Updated: Aug. 15, 2023 | Originally Published: May 27, 2015
Six years ago, I found myself in a hospital room for an ultrasound. After experiencing a heartbreaking second trimester miscarriage, I needed reassurance that my new baby, my Rainbow Baby, was still alive. To my relief, she was. However, the doctor delivered devastating news: she was diagnosed with “diffuse fetal hydrops” and heart defects, and he declared that she had a zero percent chance of survival.
Let’s pause there: zero percent.
He said she had a zero percent chance of living and suggested I undergo an amniocentesis—not for her sake, since he believed she wouldn’t survive, but to gather information for future pregnancies. It was a gut-wrenching moment. So, alongside my partner, I went through with the amnio, which ultimately revealed an extra chromosome—Down syndrome.
When our daughter was born, the so-called “miracle” happened: her hydrops resolved, and the heart defects were gone. Emily Rose, our beautiful girl, arrived without any health issues at all.
I find myself grappling with questions. How can a doctor be so certain as to declare “zero percent”? How could he make such a definitive statement, knowing that if I had taken his advice to terminate, I would have ended the life of a perfectly healthy child? There is nothing wrong with children who face health challenges, but by his own standards, he was entirely mistaken.
Why are doctors allowed to declare “zero percent” without facing any consequences? How many parents have made heartbreaking decisions based on such a claim? Why is it acceptable for medical professionals to speak so casually about Down syndrome?
I still feel the need to justify every achievement my daughter makes as if her very existence warrants an explanation. Why do I grapple with this? Why, despite the joy she brings, do I still think, “If only I had known this during my pregnancy”? Why do we label children as “high functioning,” as though their beauty and spirit must be justified by performance?
What does “functioning” even mean? Is it truly essential to living a fulfilling life? To me, “function” means to operate in a way that is natural and purposeful. Emily may not fit conventional molds, but she moves through life with intention that is uniquely hers.
Emily is now five years old. Everything I want to express about her feels like it needs to be quantified or justified. I want to shout from the rooftops about how she brightens our family, her boundless curiosity, and her incredible spirit. I thank the universe every day for this child I would have lost had I listened to the doctors.
As I celebrate her life, I still wrestle with the question: why can doctors say “zero percent” without accountability? Why is our society so quick to eliminate what we assume is imperfect when it has turned out to be so perfect all along? For more insights on this topic, check out this blog post on Cervical Insemination, which discusses similar experiences.
If you’re considering home insemination options, a reputable retailer like Make a Mom offers excellent kits to help you on your journey. For more information on insemination success rates, visit WebMD for detailed resources.
In summary, the journey of parenting can be fraught with difficult questions and uncertainties. Yet, through it all, we must recognize the beauty of each unique child and continue to challenge the narratives that limit our understanding.
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