Sarah St. Onge was elated when she learned she was pregnant, but the news of a terminal diagnosis caused doctors to deny the dignity of her preborn daughter, Beatrix.
Early in the pregnancy, problems began to occur. At nine weeks, medical professionals told St. Onge a miscarriage was inevitable. Then, a nuchal fold pregnancy test at 12 weeks detected signs of a possible genetic anomaly. By 16 weeks, Beatrix was tentatively diagnosed with Trisomy 13, a condition considered “incompatible with life.”
The diagnosis ended the conversation about treatment options. But St. Onge had already prepared herself for the possibility of Trisomy 13, and she still intended to carry Beatrix. This perplexed a genetic counselor who had referred to the baby as a product of conception, and the genetic counselor asked if St. Onge understood she would not be taking her child home if she chose to carry.
The results of the amniocentesis came back, and no genetic defects were found. St. Onge was full of hope as Beatrix continued to astound doctors with her rapid growth despite the development of some new fetal anomalies. But then a 26-week ultrasound diagnosed St. Onge’s baby with Limb Body Wall Complex (LBWC), a fatal condition with few known survivors.
The prognosis was poor, but St. Onge continued with care. An ultrasound had allowed her to experience the miracle of her unborn daughter, clearly alive inside of her womb. Though not yet born, St. Onge knew Beatrix was already a unique person, and she loved her. But the doctors only saw her as a lesser patient.
“To them, she really was just a failed pregnancy – so why not just clean everything up so we could just try again?” St. Onge said, recalling how one doctor laughed at her for being “tenacious” when she begged them to try something, sharing research she had found about survivors of LBWC. “To them, it really is just a clump of cells… they don’t believe it’s worth the trouble if you’re not bringing home a baby.”
Beatrix never opened her eyes, nor did she cry when she was born at 34 weeks. The doctors had emphasized the supposedly monstrous nature of Beatrix’s deformities, but St. Onge only saw the tiny hands, feet, and beautiful face of her sweet baby girl. Beatrix’s life on this earth was short, but St. Onge and her husband used what precious little time they had to parent her so her first and final moments in this world could be filled with love.
Beatrix passed away peacefully in the arms of the mother who had carried her and kept her safe. Intermixed with these precious moments of celebrating her daughter’s short life was terrible treatment from medical professionals. St. Onge and her husband were not offered perinatal hospice care, which would’ve granted them more time with Beatrix. Not even being able to bathe and dress their child, Beatrix left the hospital covered in blood and birth fluids.
“I will never get over that…we were denied the opportunity to bring her some dignity in death,” St. Onge said.
Voices like St. Onge’s often remain unheard in the ensuing debate regarding later abortions. While evidence suggests most are done for social reasons, in the case of fatal diagnosis, St. Onge has observed a euthanasia mindset being used to justify them. Unfortunately, according to St. Onge, women who choose abortion in this case view what they’re doing as disconnecting their child from life-support, as this is how their doctors tend to phrase it.
“When even pro-life people find terminating for fetal anomalies acceptable, it’s difficult for those of us who have carried to term – and lost our children – to find a platform out there,” St. Onge said of the silence surrounding Beatrix’s story. “The opportunities for carry to term moms whose children die— and who have a lot to say about the dignity our children are entitled to— just don’t arise as often.”
The extensive political clout surrounding the issue, as well as changing attitudes towards assisted suicide, have made it difficult for the humanity of children like Beatrix to be acknowledged. As St. Onge noted, politicians like Democratic Mayor Peter Buttigieg or Rep. Josie Raymond exploit people’s fears. Our society, she said, has rejected the idea of there being value in suffering, and our concerns about bodily autonomy have shifted towards attempting to redefine death by our own terms.
Aborting a child after an adverse diagnosis cannot mitigate grief. There is a difference, St. Onge said, between actively ending someone’s life and permitting nature to take its course. A loss still occurs, but carrying to term preserves the intrinsic value of the child by commemorating the preciousness of the baby’s life, no matter how short it may be.
Editor’s Note: Previously, Live Action News reprinted a piece written by Sarah St. Onge about her daughter. You can read it here.
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