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Having a Child with an Adverse Fetal Diagnosis: A Personal Testimony

by Sarah St. Onge Connors


When the editors of Life Matters Journal reached out to me and offered to let me tell my story

here, I immediately accepted the challenge because I believe so deeply in what Rehumanize has

to say about how we all treat one another. I’m probably the last person my friends and family

would expect to be writing for a progressive journal. My politics are most definitely right-of-

center and I actively work to have conservative representation in my local government.

Yet here I am.

Because in 2010 I delivered a baby who only lived for one hour and forty-seven minutes. She

survived just long enough to make an indelible impact on the world, however, an hour and forty-

seven minutes isn’t considered a life worth living by many on both ends of the political


Some background:

Before she was born,we knew our daughter was most likely going to die. We also knew there

were problems much earlier than most parents who receive a poor prenatal diagnosis. At only

nine weeks gestation she’d already suffered a cataclysmic accident, her olive-sized body

essentially split in half. We saw it happening in real time on an ultrasound screen: her tiny form

completely engulfed in a bubble of fluid called hydrops—a name which sounds more like a

children’s sweet than a medical ailment. I didn’t know babies could have the equivalent of

strokes while in the womb, especially when they had barely begun to form. Because the damage

looked so widespread I was sent home to miscarry… but my daughter miraculously survived. As

she developed, however, it became apparent her abdominal organs were growing outside of her

body, and by 16 weeks doctors determined her sacral bone was also positioned in such a way as

to leave her paralyzed below the waist. Sixteen weeks was the first time they used the term

“incompatible with life”, and the fourth time I was offered an abortion, if you count the initial

offer of a D&C when my doctor believed I was in the process of suffering a miscarriage.

I said no. Every time.

It took a further 9 weeks for doctors to officially name what ailed my daughter: limb body wall

complex (LBWC). Universally lethal. One of the defect complexes most commonly used in

arguments in favor of termination for medical reasons. LBWC is basically a disruption in the

embryonic folding process at the point where the umbilical cord forms, and is generally

catastrophic. The cause is unknown and there is no cure for it, and very few survivors.

My daughter had the bare minimum of requirements to fit into this category of midline defect,

and because I have a life-long history of both living and working with atypical humans, what

doctors saw as insurmountable obstacles I saw as potential challenges. While doctors attempted to coerce me into having abortion I researched stories of survivors. When they laughed at me and

told me I was tenacious for my course of study, I sought out new doctors.

Through my entire pregnancy I was pressured to end my daughter’s life. I resisted. At every

doctor’s appointment I was offered the option to terminate. I said no. I asked to have a note put

into my chart acknowledging I had already been offered an abortion and declined it, but I was

told, “We can’t do that, because it’s part of informed consent.” I was never offered support to

continue my pregnancy as part of that informed consent.

Not only did I resist abortion, but I repeatedly begged for interventions which would potentially