Worthy lives lost

October is National Down Syndrome Awareness Month. In a remarkable statement from the White House commemorating this month, President Trump declared, “From the earliest days of our Nation’s Founding, America has been guided by the sacred truth that every child is created in the holy image and likeness of God with inherent dignity and worth.  This Down Syndrome Awareness Month, we recommit to this immortal truth.”

At a time when babies with DS are being eliminated in their mother’s wombs at an alarming rate, Christians must celebrate and proclaim this immortal truth—not only in October, but every day of the year. In his statement, Trump credited screenings, along with other medical advancements, for improvements in length and quality of life for individuals with DS. Yet the same screenings that Trump touts as improving life for individuals with DS also lead to their termination at a higher rate.

This paradox is not merely theoretical, but a tangible challenge that countless families face.

Tammy Giles understands first-hand how genetic testing and screening could lead to a terminated pregnancy. When she became pregnant at age thirty-five, doctors offered her genetic testing to screen for any abnormalities in the fetus. She and her husband Chris declined. At her 20-week ultrasound, however, doctors noticed markers for DS and recommended a then-new test called non-invasive prenatal testing (NIPT). The couple agreed.

Receiving the diagnosis was a somber and scary experience. The doctor began the conversation with, “I’m sorry,” and outlined options, including termination. While Tammy didn’t feel overt pressure to abort, Chris felt the message was clear: “Abort your baby.” Their strong faith-based conviction to keep the baby led to the birth of Stella.

Today, 12-year-old Stella brings joy to everyone around her. At a Labor Day pool party, she confidently grabbed a mic and sang karaoke in front of nearly 100 people. Though non-verbal and also diagnosed with autism, Stella is flourishing—something Tammy once feared might not be possible when the doctor told her the words, “I’m sorry.”

While some women report direct pressure from doctors to abort their fetus with DS, others feel indirect coercion, as Chris did. Doctors exert immense influence over their patients in a vulnerable situation, and the way in which news of a diagnosis is framed can cause a pregnant woman to feel coerced to terminate the pregnancy.

Once reserved for high-risk pregnancies, genetic testing—especially NIPT—is now becoming standard across all risk categories. With an increase in testing has come an increase in terminated pregnancies, particularly for those diagnosed with DS. With NIPT forecasted to continue expanding, Christians must consider the tragic effects this could have on babies with DS.

When doctors deliver news of a DS diagnosis to parents, the focus is often on the limitations of DS, yet the accomplishments of individuals with DS are numerous and varied. They are actors, athletes, artists, entrepreneurs, motivational speakers, college graduates, and even politicians. We should genuinely rejoice in these accomplishments and fervently work to support people with DS to reach their full potential, yet we must not confuse accomplishments with value.

The adult with DS who needs full-time care is just as valuable and worthy of life as the famous athlete or motivational speaker. The worth of individuals with DS is not dependent upon what they can or cannot achieve, but rather on the fact that they are humans created in the image of God. Such a life is to be celebrated, not lamented. As Tammy celebrates, “Stella does Stella, and it’s a beautiful thing.”

Genetic testing gave Tammy and Chris time to process Stella’s diagnosis and prepare to fully celebrate her birth, though she acknowledges its danger for parents who may not share their strong belief in the inherent value of every human life. She now wants to transform how doctors deliver a diagnosis of DS to parents, so that the first words out of their mouths would be “congratulations!” not “I’m sorry.”

Genetic testing is not the determining factor of value and should never be used to screen which humans are worthy of life and which are marked for termination. While some societies seek to be free of DS, Christians should lament each lost life and fight to keep the light of DS shining bright in our world.