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After hearing about the infamous couple who just aborted their unborn baby with Down syndrome, some pro-lifers are turning against genetic testing. The argument goes something like this: Prenatal testing enables eugenics, so conservatives and Christians shouldn’t do it.
“Fetal genetic testing and tests to ensure a ‘perfect’ baby are doing more harm than good,” concluded Sadie Gannett, a registered nurse with over half a million followers on Instagram.
“Both my pregnancies I’ve denied the genetic [test] because to me it wouldn’t make a difference. Baby will still be loved, baby will still be carried to full term and given a chance of life,” said another influencer.
One Gospel Coalition article from 2022 similarly discouraged prenatal testing, arguing “we should carefully weigh our motives and consider if such testing is truly prudent.”
I understand exactly where this response comes from. I, like many pro-life conservatives, was outraged by the termination of YouTubers Jesse and Ashley Ridgway’s unborn child. The Ridgways decided to end the life of their child because he, diagnosed with Down syndrome in utero, was not the healthy, normal child for which they had hoped. Eugenics, yes. Terrible, absolutely.
But is prenatal testing the culprit? No.
Prenatal, newborn, or maternal genetic screening should not be held responsible for the evil that is eugenics and which is enabled by the pro-choice ideology. The pro-choice movement has turned what should be a lifesaving tool for parents into a deadly litmus test for babies “perfect enough” to be allowed to continue to live. It is vital that we reclaim genetic testing, whether prenatal, maternal, or newborn genetic screening, and bring it back within the rightful umbrella of life-affirming medical practices as all medical care should be.
My reasons for this are personal. Last November, our neighbors’ two-year-old daughter, Rosie, stopped walking unassisted and began waking up with pain in her legs at night. After rounds of testing, our neighbors received the news that is every parent’s worst fear. Their daughter is suffering from a rare genetic disease called Metachromatic leukodystrophy, or MLD, which is always fatal after symptoms began to manifest.
Rosie, who met all of her developmental milestones up until about 18 months old, will be robbed of everything in mere months’ time. It is difficult for me even to catalogue what will happen to their sweet child: Her muscles will slowly stop working, and she will lose the ability to move. At the time of writing this, she can no longer walk, and she had a feeding tube put in three weeks ago. Then she will lose her ability to speak. Her memories will go, and she will suffer from childhood dementia. She will eventually slip into a vegetative state, and, depending on how long it takes for a significant bodily system to give out, she will remain in a vegetative state until she dies.
She will suffer the unimaginable. And for her parents and siblings, well, it’s an understatement to say that this will change them forever.
But here’s the thing: Genetic testing would have spared Rosie this terrible suffering and would have saved her life.
MLD is caused by a gene mutation that can only be meaningfully corrected with gene therapy if the disease is caught before nerve damage begins to manifest. Unfortunately, by the time children like Rosie begin showing symptoms, the nerve damage is already too far along, and treatment is not lifesaving. Gene therapy involves high-intensity chemotherapy, which can accelerate disease progression and death in symptomatic kids. Comprehensive genetic testing is vital in catching MLD and diseases like it and treating them in early infancy before it’s too late.
Though the treatment process is arduous, it is nothing compared to the terrible progression of the disease, and there are now many children living normal, healthy lives with MLD thanks to stem cell gene therapy administered as soon as possible. Currently, MLD is not included in routine prenatal screening, but an extra comprehensive genetic panel can be requested and taken by the mother to determine if the baby is at risk of inheriting the disorder and others like it, or the newborn can be screened for MLD immediately post birth. In fact, last year, Health and Human Services Secretary Robert F. Kennedy Jr. recommended that MLD be added to newborn screenings.
According to Rosie’s mother, “The regret of our lives will always be that we didn’t realize it was important to do extra genetic testing.”
My heart breaks with her because I also did not understand how lifesaving genetic testing can be. Our neighbors’ little girl would be running around with her peers right now if her parents had known that she carried the deadly gene mutation. She’d be facing a long road of treatment, not slow physical and cognitive degeneration and death. This comes back to the fact that most parents don’t see genetic testing, especially non-routine or extra testing, as potentially lifesaving for their children. Rosie’s parents didn’t realize this, or they’d have done it in a heartbeat.
And that’s often the case with pro-life moms like myself. I also did not understand how valuable genetic testing can be until our neighborhood was rocked by this little girl’s diagnosis. When I explained to my midwife why I wanted to do extra comprehensive genetic testing during my current pregnancy (specifically stressing that it would not change the outcome of the pregnancy), she told me that there are many such diseases like MLD, that new gene therapies are continually being developed to combat the diseases, and that, like with our neighbor, most rely on immediate diagnosis in order to save the baby’s life.
I am carrying my fourth baby, and I only just understood how lifesaving genetic testing can be because of our neighbor’s situation. Had I not known to ask my midwife because of our neighbor, I never would have known how cruel some of these genetic diseases are, the evolving breakthroughs in medical treatments, or that the earlier the diseases are caught the higher the chance of a cure is.
But in the pro-life camp, we are not only largely unaware of how important these kinds of tests can be, but pro-life mothers are particularly wary of genetic screening for multiple reasons. According to one mom in my mother’s group, made up of like-minded pro-life women, she refused genetic testing because she was under the mindset that it “wouldn’t change anything” and that she would cherish her baby regardless of genetic condition. Another mom said she avoided it because she wanted to avoid unwanted stress and to trust God with her pregnancy.
The crunchy movement is at play here as well. Some mothers would rather have an all “natural” pregnancy and birth experience, so they do not do any kind of genetic testing to maintain as natural of a pregnancy and postpartum experience as possible. And then there are the more sinister reasons that pro-life mothers avoid genetic testing; one mom said she avoided genetic testing because, shockingly, her doctor told her that they would not attempt to stop early labor if it resulted from certain genetic conditions.
Pro-life parents see genetic testing as, at best, a tool to help inform parents of how to care for their child, or, at worst, a litmus test for selective abortions, which rightfully generates their animosity toward it. Too often genetic screening is a tool of eugenics and not advertised in the lifesaving manner that it should be.
That needs to change. When used to help prepare birth experiences or enhance newborn care, genetic testing appeals to most pro-life parents. But almost all mothers I spoke with did not understand, as I didn’t, that genetic testing can allow families to diagnose diseases that would otherwise go unnoticed until it is too late, and that the earlier the diagnosis the better the outcome. We cannot let genetic testing, which can save the lives of precious children like my neighbor’s child, become the scapegoat for the real culprit: a disregard for human life that is larger than, but certainly encompasses, ableism.
Consider the mother who was told that care would be withheld should her baby test positive for certain genetic conditions. We as mothers must hold doctors accountable for this kind of blatant disregard for human life. We should seek out pro-life minded medical professionals (I have had a lot more luck with finding like-minded midwives vs. obstetricians) who we feel assured would do anything in their power to save babies regardless of how grim their prognosis. We need to demand that doctors promote genetic testing as the lifesaving tool that it can be, not as a litmus test for the “normal” baby.
We as pro-life mothers need to continue to speak out over its misuse (the rightful outrage over Ridgways, for instance). Our goal should always be that the sacredness of all persons, regardless of gestational age, dependency, health, socioeconomic status, disability, or any other qualifier, be promoted and safeguarded through life-affirming healthcare, whether that be fertility, midwifery, OBGYN, or newborn care.
And if the pro-life movement is to apply this kind of comprehensive, life-affirming approach to maternal-fetal medicine, we cannot shy away from the new advancements in genetic disease testing and treatment. Because lives like Rosie’s are way too precious not to fight for.
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Rebekah Bills is a freelance writer and mother of three. She previously served as a civilian intelligence officer in the Defense Intelligence Agency.
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