Parenting
They Told Me My Daughter Had No Chance of Survival
by Jessica Thompson
Updated: August 15, 2015
Originally Published: May 27, 2015
Six years ago, I visited the hospital for an ultrasound. Having recently experienced a second-trimester miscarriage, I desperately needed to confirm that my new pregnancy, my Rainbow Baby, was thriving. Thankfully, she was alive.
However, I was met with devastating news: my daughter was diagnosed with diffuse fetal hydrops, a condition that caused fluid to separate her skin from her body. To make matters worse, she had holes in her heart. The doctor delivered the crushing verdict: she had a zero percent chance of survival.
Zero percent. Take a moment to absorb that. The doctor suggested I consider an amniocentesis—not for her benefit, since he believed she wouldn’t survive, but to prepare for potential complications in future pregnancies. A lump formed in my throat. Zero percent.
Despite the grim prognosis, I went ahead with the procedure alongside my husband. The amniocentesis subsequently revealed that our baby had an extra chromosome: Down syndrome.
When Mabel June was born, miraculously, her hydrops had resolved, as had the heart issues. She arrived in perfect health.
Why is it acceptable for a doctor to declare “zero percent” like it’s a definitive fact? If I had taken his advice and chosen to terminate the pregnancy, I would have ended the life of a healthy child. There is nothing inherently wrong with a child facing health challenges, but based on his own criteria of health, he was completely and utterly mistaken.
Why do doctors have the latitude to utter “zero percent” without facing consequences? How many other babies have been lost because a physician delivered similar news?
Why is it permissible for anyone, particularly a doctor, to communicate such devastating predictions to expectant parents? Why do we so easily accept these bleak assessments, particularly concerning Down syndrome, when so often they are based on fear and misunderstanding?
Why, even now, do I find myself needing to justify every accomplishment of my daughter as if her very existence requires validation? I see her vibrant spirit, her joy, her energy, and while I revel in who she is, I can’t help but ponder, “If only I had known this back then.”
Why do we equate a child’s worth with their perceived level of functionality? What does “functioning” even mean? Does it hold any significance in a life that is meant to be lived fully?
For clarity: “function,” as a verb, means to operate effectively, while as a noun it refers to the natural purpose of a person or thing. Mabel operates in her unique way, which may not fit conventional definitions, but her presence in the world is filled with intention and authenticity. She is precisely who she is meant to be.
At five, Mabel continues to amaze us. I want to express how much joy she brings to our lives and how her vibrant spirit enhances our world. She is intelligent, creative, fearless, and innately curious. Every day, I thank my lucky stars for this child who I might have lost if I had listened to medical advice.
As I celebrate her existence, I still seek answers. Why can doctors say “zero percent” without accountability? Why are we as a society so eager to eliminate what we perceive as imperfect when it turns out to be perfect all along?
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In summary, Mabel’s story illustrates the complexities surrounding medical predictions and the profound impact they can have on families. It highlights the need for compassion and accuracy in prenatal care, and the importance of celebrating every child’s unique journey.