Gospel Hope for the Last Children of Down Syndrome

My family lives in Lancaster County, Pennsylvania—the heart of Amish country. The Amish presence has a unique and beautiful influence on the collective culture, yet Amish buggies slow us down when driving.

One day, while on his way to work, my son Tim got annoyed. As we pulled around to pass a horse-drawn carriage, Tim burst into taunting song. To the tune of “Holy, Holy, Holy” he warbled, “What are you doing here? Go and get a C-A-R!” Apparently, an unwillingness to accommodate others in their differences is universal. You see, my 30-year-old son Tim has Down syndrome. Oh, the irony of it all.

A different irony colors “The Last Children of Down Syndrome,” a December 2020 article in The Atlantic. It explores hard questions behind the high—95 percent—abortion rate of children with Down syndrome in Denmark. Writer Sarah Zhang notes:

Denmark is not on its surface particularly hostile to disability. . . . Yet a gulf seems to separate the publicly expressed attitudes and the private decisions. . . . When the decisions so overwhelmingly swing one way—to abort—it does seem to reflect something more: an entire society’s judgment about the lives of people with Down syndrome. (emphasis mine)

Why the disconnect? Several themes emerge in Zhang’s article: the role of eugenics, parents’ profound risk aversion, and societal obsession with achievement. While the story was written about Danish society, there are parallels to life in the United States. We too are a country that increasingly embraces diversity, yet we have an abortion rate that, while not as high as Denmark, still results in the vast majority of children diagnosed in utero with Down syndrome being aborted.

How can we better understand the issues that influence a society’s judgment of Down syndrome? How can we learn to actively value people with Down syndrome and become better in tune with the unique gifts they bring to society and the church?

Primer on Down Syndrome

Psalm 139 beautifully reminds us how God uniquely designs all people:

For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. (Ps. 139:13–14)

For people with Down syndrome, an additional 21st chromosome represents a distinct way they’re fearfully and wonderfully made. Inclusion of this additional genetic material results in discernible characteristics and an increased likelihood of various medical conditions. Intellectual disability associated with Down syndrome occurs over a spectrum; most people with Down syndrome experience only mild or moderate cognitive impairment.

For people with Down syndrome, an additional 21st chromosome represents a distinct way they’re fearfully and wonderfully made.

According to current statistics, one in every 700 babies born in the United States is diagnosed with Down syndrome. The underlying causes are not known, but the incidence is correlated with maternal age. In 2007, the American College of Obstetricians and Gynecologists began offering prenatal screening for Down syndrome to women of all ages. Using the latest technology, a probable diagnosis can be obtained as early as 11 weeks into pregnancy. This is not good news for babies with Down syndrome.

Role of Eugenics

Prenatal testing for Down syndrome is rooted in eugenics, a movement that originated in late 19th-century England and was promoted in the U.S. during the next century. Sir Francis Galton, a cousin of Charles Darwin, coined the term “eugenics,” which means “good genes.” The movement’s aim was simple: to multiply the desirables and eliminate those society deemed undesirable. As Galton stated, “What nature does blindly, slowly, ruthlessly, man may do providentially, quickly, and kindly.” In order for this intentional natural selection to be effective, he argued, eugenics “must be introduced into the national conscience, like a new religion.”

Once eugenic philosophy was in motion, horrible real-world consequences followed including the push for increased segregation, institutionalization, and sterilization of “the feebleminded” in the name of bettering society.

Deinstitutionalization of people with intellectual disabilities has occurred over the last 50 years and forced sterilization is now outlawed. However, eugenic philosophy and methods are still active in the selective abortion industry. As Zhang notes, “Few people speak publicly of wanting to ‘eliminate’ Down syndrome. Yet individual choices are adding up to something very close to that.”

Sad Irony in the Gospel’s Light

The Bible provides Christians with a different foundation for understanding human value:

So God created man in his own image, in the image of God he created him; male and female he created them. (Gen. 1:27)

Since God created us in his image, our value is unchangeable. As image-bearers, humans are distinct from other creatures, welcomed into special communion with God, and tasked with extending his character and work by ruling over creation. As John Kilner writes, “Being the image of God turns out to mean having a special connection with God and indeed being a meaningful reflection of God.”

The fall of humanity—through our first parents’ sinful quest for autonomy from our Creator—did not negate our value, but it did affect our relationship with God. What’s more, the fall has ongoing ramifications for our relationships with self, others, and nature. Chromosomal abnormalities are one example of a disruption with nature. (They are not, as Jesus stated in John 9, a result of personal sin.) In fact, the more scientists explore the human genome, the more we realize how many anomalies we all live with, though we don’t always know the effects. Ability and disability occur along a spectrum, across every aspect of our personhood. As such, disability can be understood as a normal part of life (something to be expected) in an abnormal world (where human life is not operating as it was originally designed).

The more scientists explore the human genome, the more we realize how many anomalies we all live with.

The sad irony of eugenics is that it allows fallen humans to make the autonomous decision that another human life is not worth living. Looking across the broad spectrum of human abilities and disabilities, we too often, as Harvie Conn states, “see what we want to see. At the heart of the filtering process is a heart in rebellion against God.” This repeats the error of the first sin in the garden. It is, as Andy Crouch reminds us, a quest for “godlike power without God-like character.”

But if autonomy is at the heart of eugenics, vulnerability is its antithesis. With a distorted view of ourselves, we can perceive people with Down syndrome as merely those who need our help. Yet we all need God’s help—Christ’s saving work and the Spirit’s transforming work. With a distorted view of ourselves, we can also view people with Down syndrome as those who need change to become more like us. Yet the gospel isn’t about making people with Down syndrome more like you and me, it’s about making us all more like Christ.

The gospel is the good news of Jesus’s saving reign. It pushes back the ramifications of the fall in every arena of life starting with our personal relationship with God and moving into our relationships with self, others, and nature. Christ’s kingdom comes through his power, not ours. And it will not come in all its fullness until Christ’s return. Until that day, both the prenatal technologies we employ and the way we treat people with Down syndrome must affirm our shared status as full image-bearers.

Responding to Risk Aversion

A second major theme of The Atlantic article is expectant parents’ profound risk aversion. When parents receive a positive prenatal test result for Down syndrome, fear plays a powerful role. One researcher noted, “The women who chose abortion feared the worst possible outcomes.” Even when acknowledging the possibility that a child may not be severely impaired, in the end, “the uncertainty just becomes too much.”

Many parents of children with Down syndrome will testify to mourning after receiving their child’s diagnosis, whether in utero or after birth. The grieving is not over the child they have, but the loss of expectations and unconscious hopes for their lives. Zhang has a profound insight, “[Nothing] is guaranteed with any kid, of course, but while most parents go through a slow realignment of expectations over the years, prenatal testing was a rapid plummet into disappointment—all those dreams, however unrealistic, evaporating at once.”

The sad irony of eugenics is that it allows fallen humans to make the autonomous decision that another human life is not worth living.

Accurate information on Down syndrome helps to alleviate unfounded fears. Yet information alone is not enough. As Zhang notes, “parents who made the unusual choice to continue a pregnancy after a Down syndrome diagnosis [were] more willing to embrace uncertainty.” For Christians, this willingness comes from confidence in the character of our covenant-keeping God who faithfully cares for us.

Not only is God trustworthy, but he also providentially writes our stories. This truth is significantly countercultural. Nate Shurden—a pastor I interviewed and father to baby Lila, who has Down syndrome—says, “It is good that he’s writing our story. He’s in control of it and not us. Saying that is an act of faith.”

I also spoke to Pastor Tim Locke, father to Matt, a 17-year-old with Down syndrome, who debunks the myth that God only gives children with Down syndrome to special people. He says, “No. God makes us special. It’s not a special type of person—it’s the person you become that’s a beautiful thing.”

Zhang quotes the chilling words of a woman who had chosen abortion after a diagnosis of a fetal anomaly: “I have guilt for not being the kind of person who could parent this particular type of special need. Guilt, guilt, guilt.” This is where gospel hope is so powerful. As Christians, we know no one is the “kind of person” we need to be. We’ve all made choices that produce guilt, guilt, guilt. This woman is one of us, and every ounce of forgiveness she needs is available in Christ. He offers life even to those who haven’t chosen it for their unborn child.

Learning to Value What God Values

Zhang closes her article by pondering society’s obsession with achievement and how it informs our perceptions of people with Down syndrome. This cuts to the heart of the matter. As a society, our personal identity is linked to what we do, how we perform, and what we accomplish. Zhang recognizes that emphasizing the capabilities of people with Down syndrome is an “important corrective to the low expectations that persist.” However, she acknowledges, “I’ve wondered why we so often need to point to achievements for evidence that the lives of people with Down syndrome are meaningful.”

The Bible’s powerful story, by contrast, roots each person’s meaning in being an image-bearer, and if we have come to Christ, in our status as his adopted children. Trusting in Christ’s perfection in exchange for our imperfections means we have nothing to prove. Our mission is to reflect his glory, not achieve our own.

In this way, the biblical message opens our hearts to people who have historically lived on the margins of both society and the church. Scripture teaches us that it’s not enough to invite people with differences into our midst. We must allow who we are and how we function to be transformed by their presence. As Harvie Conn states, the church’s call is “not only to proclaim the kingdom, but to exemplify it.” Our congregations should be places that share the gospel with people with disabilities and their families and that also celebrate their presence among us.

Pastor Shurden reminds us how this happens: “True inclusion and diversity requires sacrifice. At the heart of it, there’s got . . . to be a connection to Christ’s sacrifice for us.” So, let’s take our eyes off human achievement and, instead, look to what Christ has achieved on our behalf. Remembering God’s faithfulness to us in Jesus, we can commit ourselves, again and again, to choose sacrificial love over fear. And we can abundantly honor all people who are made to reflect God’s character through their unique, God-given capacities.