Let me begin this essay by asking questions of the reader. Of the following groups in our society, which of the following would you think were most likely to be happy with their lives; happy with who they are; happy with their appearance; their love for family, siblings; and their ability to make new friends? Your choices of groups are lottery jackpot winners; teenagers; successful single adults 21-35; couples with one child only; church going couples with more than three children; financially stable retired individuals or children with Down syndrome. The correct answer to each of these responses above is children with Down syndrome (DS.) In the DS population, the percent of children to report happy lives (99%); happiness with who they are (97%); how they look (96%); love for their families (99%); love for brothers and sisters (96%) and their ability to make new friends (86%) is higher than any other demographic group in America. So, why is that? Why are children with DS happier than people with wealth? Success? Accomplishments? You might say that the expectations or aspirations of children with DS are much more modest. Their horizons are considerably closer to them than that of typical people planning long term careers. Perhaps DS youngsters (and DS adults) are more trusting, or just plain childlike in their wonderment of our planet and our lives and relationships. Didn’t Jesus says “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven (Matt 18:3?)”. Let us look more closely at the enfants-de-dieu.
Many of us have complicated relationships with our families, peers, and even our Creator. We are selfish, devious, guilt-ridden, and manipulative just to name a few characteristics. How much easier might things be if we could just unpack our guilt, anger and hurt? How refreshing would that be? It’s just too complicated, huh? In this regard, perhaps we could learn from youngsters with DS? Jean Piaget, the Swiss developmental psychologist would come up with all sorts of interesting, if not entertaining answers to profound questions from small children simply by asking their opinion about things, such as “Where do dreams come from?” and “Who made God?” But who has invested the time and effort mapping responses from people with DS? Who respects them? Who beyond their families even gives them a second thought unless the evening news is covering the Special Olympics?
When more is less
Let’s look at how “normal” people score in contrast to the DS community. Seventy-five percent of typical teenage girls are unhappy with how they look according to Forbes. Only 48% of adults are happy with their lives. And only 63% of Americans are happy with their appearance. If you exclude men and throw in an upcoming trip to the beach, the number is even lower than that. And while the DS children in the study were teenagers, themselves, it took “normal” people another ten years before they could truly appreciate their siblings, and then they still fell short of what the DS group reported.
I’m not faking these statistics or begging the question, but neither am I building an ironclad argument that would get a graduate committee to consider my dissertation without reservation. Regardless of how you massage the data, children with DS are much happier with themselves and their families than typical families. So, again, why?
What is Down syndrome?
We all have genes and chromosomes. Genes are pieces of coding that determine whether we will have green eyes, brown hair, problems with breast cancer or high cholesterol early in life, and so on. These genes “reside” on the chromosomes found in each of our cell nuclei. Humans have forty-six chromosomes, twenty-three from each parent. Two of these chromosomes are sex chromosomes (x and y), which means they determine the sex of the baby, normally either xx or xy, thought there are unisial variations such as xo, xyy, xxy, and so on. Different chromosomes have different numbers of genes on them.
Illustration credit: Design (Shutterstock.)
In humans, Chromosome 1 contains the maximum number of genes (2,968.)
In humans, Chromosome Y contains the least number of genes (231.) Chromosome Y is a sex chromosome.
In humans, Chromosome 21 is the smallest chromosome and contains 300 genes. Normally, there are two Chromosome numbered 21 (one from each parent.) In the case of DS, there is also a third Chromosome 21.
So, while the human species has 46 chromosomes, a person with DS has 47 (See the graphic below where the third chromosome is marked in red.) Does that mean DS children are not truly human? Or, perhaps, more human than the rest of us because of an extra chromosome? Certainly not! A small mammal resembling a deer found in Asia has only 7 chromosomes (one more than the common mosquito.) Honey bees have 32 chromosomes; chimps and gorillas have 48 chromosomes (two more than us.) So, the identity of a breed, it’s potential, etc. is much more than the number of chromosomes it has. That’s because the purpose of chromosomes, themselves, is to be sure that the “DNA is replicated [accurately] and distributed appropriately during cell division.”
However, today’s society places little value on a child with DS. You might think having an extra chromosome is a good things, but it is not in terms of general health and intellectual function.
Illustration credit: Ody_Stocker (Shutterstock)
According to the centers for Disease Control and Prevention (CDC), the most common traits found in DS are:
A flattened face, especially the bridge of the nose
Almond-shaped eyes that slant up
A short neck
Small ears
A tongue that tends to stick out of the mouth
Tiny white spots on the iris (colored part) of the eye
Small hands and feet
A single line across the palm of the hand (palmar crease)
Small pinky fingers that sometimes curve toward the thumb
Poor muscle tone or loose joints
Shorter in height as children and adults
About 1 in 700 children conceived have DS, mostly to older mothers (ages 35-40 and up.)
Practical considerations
The National Association for Down Syndrome is an excellent resource for family members of someone with DS as well as the general public. There is a good amount of practical advice, including:
Most children with Down syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different. Early Intervention services should be provided shortly after birth. These services should include physical, speech and developmental therapies. Most children attend their neighborhood schools, some in regular classes and others in special education classes. Some children have more significant needs and require a more specialized program.
Some high school graduates with Down syndrome participate in post-secondary education. Many adults with Down syndrome are capable of working in the community, but some require a more structured environment.“
Reclaiming the image of God in children with 47 chromosomes
Corey Latta writing in Christianity Today speaks to this issue from personal experience:
Until then [i.e., the birth of his child with DS], to my mind, intelligence, rationality, and language were measured against a standard of competency. Those most capable of demonstrating these characteristics best bore the image of God.
But Gus, with his protruding tongue, floppy frame, and inarticulate attempts to speak, posed new questions. What about those who would never reason or speak at an exemplary level? How do people with Down syndrome—how would my boy—carry the imago Dei? Looking at the image of God solely through the steely eyes of doctrine had left me with a sort of astigmatism. Life had now offered me the corrective of experience.
Then again, we have St Paul who tells us (II Corinthians 12:9):
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
Photo credit: Duro Guzenda (Shutterstock.)
Paul, of course, was speaking about a thorn (σκόλοψ) in his flesh. Cataracts? Epilepsy? I certainly don’t intend to suggest that DS is a thorn in anyone’s flesh. Instead, I ask that you focus on the phrase “my power is made perfect in weakness.” Tie this into verse two of the same chapter where Paul writes “For when I am weak, then I am strong.” Weaknesses, vulnerabilities, naïveté, intellectual limitations seem to be hallmarks in DS. Maybe these sorts of characteristics are precisely the formula or the prerequisites that God looks for in order to accomplish powerful outcomes? Who is to say that the unsophisticated prayers of a child with DS are not as fervent and effectual as (or more so than) yours or mine? And then, look at faith. Faith does not always come easy to adults. Our schools and our society teach competing hypotheses and contending theories about our origins, who Jesus was, the Bible, even the existence and fundamental goodness of God. It is not unusual for many who pray to have to block out thoughts like “God doesn’t hear you” or “God doesn’t love you” from their mind. Others are gradually consumed and their hearts polluted by negative emotions such as hate, racial prejudice, envy and jealously, lust, greed and so on. In Mark 9:24 we have the father who brought his epileptic child to Jesus to be healed. Yet, when told in a certain way that faith can do miracles, the father says in essence: “I do believe, but help me with my doubt.” Perhaps we can shorten that to the clause “I do believe, but . . .”
What struggles and doubt (if any) run through the unquestioning mind of children such as these?
Scripture holds children in high esteem
Both the Old Testament and the New Testament speak highly of children. Consider Matthew 19:13-14
Then people brought little children to Jesus for him to place his hands on them and pray for them. But the disciples rebuked them.
“Jesus said, ‘Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.’”
Who can argue that a five year old happy, loving person with DS is not truly a child? And if handicapped, wouldn’t a loving parent (or God) love that child even more?! Or, in that case, that the Kingdom of God belongs to that child and vice versa? Referring to a small girl with DS, the late Morris West sums it up this way in his book “The Clowns of God” as Jesus might:
She will never offend me, as all of you have done. She will never pervert or destroy the work of my Father’s hands. She is necessary to you. She will evoke the kindness that will keep you human. Her infirmity will prompt you to gratitude for your own good fortune … More! She will remind you every day that I am who I am, that my ways are not yours, and that the smallest dust mite whirled in the darkest spaces does not fall out of my hand. . .”
So, West suggests that children with DS are necessary in part because they engender the humanity and humility that we need to seal our identities. To reflect who we are (or should be.)
David writes in Psalm 139:13ff:
“For you created my inmost being; you knit me together in my mother’s womb. Ipraise you because I am fearfully and wonderfully made; your works are wonderful,I know that full well. My frame was not hidden from you when I was made in thesecret place, when I was woven together in the depths of the earth. Your eyes sawmy unformed body; all the days ordained for me were written in your book beforeone of them came to be.”
Psalm 139:13-16
God knows what children will have that extra chromosome and which will not. Yet, He does not reject these children with 47 chromosomes, and in fact, at least implicitly commands us to love them (Matthew 25:40: ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me ….”). But if the Spirit of God lives and moves in your life, you need not be told this. You do it by nature.
Does this passage above refer to children in utero with Down syndrome, too? As the author of an article in Crosswalk notes, “An extra chromosome does not sneak past God . . .” God knew that this unborn child had DS, yet he continued to “knit the child together.” In this same article, author John Knight explains that while the “world” may marginalize Down children, and may not have much use for them, the Church needs them and their talents. Says Knight:
And let’s really confound our culture and the world by encouraging those withDown syndrome to develop and use their gifts in our churches. They haveGod-given good works to do (Ephesians 2:10
One might make the biological argument that a creature with less of more than 46 chromosomes is not truly human. How is it then that these children with Down are so adept at arousing our humanity and improving on it as we interact with them? Therefore, and based on the experiences with DS, a number such as 46 seems neither necessary nor sufficient to gauge our humanity.
Search and destroy?
I am personally pro-life, but I cannot in my heart pass judgment on parents who are facing the birth a child with Down and considering the termination of their pregnancy. I know in my mind and spirit, however, that such termination is wrong.
Thus far, I may have painted an overly-rosy portrait of children thus afflicted. Some children with DS can work simple jobs, commute from place to place on public transportation, understand token economies, etc. Others may be profoundly retarded, barely toilet trained if at all (IQ’s run between 30 and 70. However, “intellectual disability associated with Down syndrome occurs over a spectrum; most people with Down syndrome experience only mild or moderate cognitive impairment.”) And, yet:
Children with Down syndrome have a higher incidence of infection, respiratory, vision and hearing problems as well as thyroid and other medical conditions. However, with appropriate medical care most children and adults with Down syndrome can lead healthy lives. The average life expectancy of individuals with Down syndrome is 60 years, with many living into their sixties and seventies.
Children with DS may have angry outbursts from time to time as they attempt to deal with frustration. Most have health issues requiring vigorous intervention or long term follow-up. Some need reconstructive surgery on their esophagus at birth so as not to aspirate formula, and some pediatric surgeons may be reluctant to perform this life threatening surgery because of other profound health issues that remain. Many parents who have a child with DS love their child dearly. But probably many of these same loving parents may prefer not to have the experience repeated in another child.
“The average life expectancy of individuals with Down syndrome is 60 years, with many living into their sixties and seventies.”
National association for Down Syndrome
Though chorionic villus sampling and other procedures such as amniocentesis (examination of the amniotic fluid (the fluid from the sac surrounding the baby and percutaneous umbilical blood sampling (PUBS)—which examines the blood from the umbilical cord, doctors can determine with a reasonable degree of accuracy whether the baby has DS. They cannot tell, however, how significant the DS characteristics might be.
Done early in the pregnany, doctors can now tell at an early gestational age whether the fetus has DS. At that point, the mother may decide–or be encouraged to–abort the fetus.
Is that so bad? Well, consider this. According to Harvard, “mutations in the connexin 26 gene (on chromosome 13) are the most common genetic cause of deafness and are thought to be responsible for up to half of recessive nonsyndromic hearing loss.” Should babies be aborted because they face congenital deafness? Or blindness. Suppose the fetus is female and she has the BRCA (breast cancer) gene?
“Suddenly, a new power was thrust into the hands of ordinary people—the power to decide what kind of life is worth bringing into the world.”
Atlantic Magazine
Globally, the DS population has been reduced in recent years by thirty percent according to the Lozier Institute. Ths reduction is due to selective abortion, though in the aftermath of Dobbs v. Jackson Women’s Health Organization (June 2022), it is difficult to tell with certainty at this point how difficult it may be to procure an abortion, even in cases like this. Today, in some countries such as Denmark, DS babies are becoming a vanishing population. In Iceland, children with DS are still being conceived as ever with DS but are no longer being born. When the State empowers parents with the ability to decide whether to abort a fetus with DS or not, what they are doing is allowing the parents to decide whether a child with DS is worth allowing them to live. Better put:
The sad irony of eugenics is that it allows fallen humans to make the autonomous decision that another human life is not worth living. ”
As fallen creatures, every decision, all of our motives and good intentions have been corrupted. As T.S. Eliot once wrote: “The last temptation is the greatest treason: To do the right deed for the wrong reason.” What this means is this:
T.S. Eliot wrote those words to describe how difficult it is to purge our motivation of selfish concerns, to do things for reasons that are not ultimately about ourselves.”
It is one thing to decide not to let a fetus come to term because it will likely suffer a life with no awareness, behaps because it is anencephalic, or because it will die a painful death in infancy due to some congenital malformation. It is quite another thing when the wishes of the mother motivate the decision based on other considerations. But again, I understand how painful a decision this must be.
There are other special populations of babies being selected for abortion. Children with Tay Sachs, perhaps Kinefelters, Triple X, and Cystic Fibrosis. But in this essay, I’d like to focus on DS.
Most people with DS are either sterile or at least infertile. However, there have been several cases where those with DS have fallen in love with another person with DSand married. The chances of them having a child with DS run from 50% to >99% depending on whether one or both parents have DS.
For more information:
There are several interest groups or nonprofits that offer detailed information on DS. These include:
Global Down Syndrome Foundation This foundation is dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy.
National Association for Down Syndrome The National Association for Down Syndrome supports all persons with Down syndrome in achieving their full potential. They seek to help families, educate the public, address social issues and challenges, and facilitate active participation.
National Down Syndrome Congress: The “leading national resource of support and information for anyone touched by or seeking to learn about Down syndrome.
