Brianna Heldt is a writer, speaker, and radio show host. She blogs at www.briannaheldt.com, has been a featured guest on BBC Radio, and her work can regularly be found in other online publications as well. A convert to the Catholic Church, Brianna explores topics ranging from faith and social issues to adoption and large family life. She and her husband make their home in Denver, along with their eight children.
Did you hear the big news? According to CBS News, Iceland has nearly “eradicated” Down syndrome!
Thanks to prenatal screenings, combined with an intensive genetic counseling program, 98% of Icelandic women carrying a child with markers for Trisomy 21 are choosing abortion. With a population of 330,000, this means that only one or two babies with Down syndrome are born each year. Last year though, there were three--which they say is “quite more than usual.” Oh, the horror!
Genetic counselor Helga Sol Olafsdottir sums it up well. “We don't look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication... preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder -- that's so black and white. Life isn't black and white. Life is gray.”
A “possible” life? “Preventing” suffering? Uh, is this a joke? First of all, a baby IS a person, regardless the makeup of their chromosomes or how long they’ve been gestating in the womb. It has been scientifically demonstrated that a fetus can feel pain, respond to light, and even recognize faces. Of course above and beyond what can be proven in a laboratory experiment, we Catholics believe that the fundamental human right, which all other rights must draw from, is the right to life--from conception until natural death. So there is nothing “possible” about life here--a child (whether an embryo, fetus, newborn, or moody teenager) with Down syndrome IS a life.
And as far as suffering goes, well, good luck preventing it! I have a feeling that no matter WHO you are, how many children you have, or what you do to insulate yourself from any and all forms of impending doom, you are going to, at some point, suffer. It may sound depressing or defeatist to say that, but it’s simply the truth. Because disease, death, and brokenness don’t play favorites. They don’t somehow pass by people who surround themselves with soft, padded walls and financially solvent five-year plans. No, they come crashing down and breaking in when you least expect it, sometimes in the most horrifying of ways. Grief, pain, and the gnawing ache of loss will most likely touch every last one of us. No one, it seems, makes it out unscathed. The cross you bear may look different from mine, but they are both crosses just the same.
So to argue that killing a small child (because he or she may have “distinct facial features and developmental challenges”) is somehow a “gray” area, and one that indicates forward progress, is outright lunacy. Psychopathy, even.
Of course there is occasionally the knee-jerk reaction to news stories like this, which says that our friends with a third copy of the 21st chromosome are always happy, or never suffering, or that parenting a child with special needs is filled only with unicorns and rainbows. This is, of course, also absurd.
And yes I know of what I speak, because I happen to have two daughters with Down syndrome. We adopted them at ages two and four, respectively. They were both born with significant heart defects, have had three surgeries between them, and face challenges every single day. Mostly they are indeed fairly happy girls (particularly when pizza is involved), but sometimes they get mad, grow weary of being bossed around by well-intentioned siblings (or parents!), and struggle to find their place in social settings. Their respective personalities, strengths, and weaknesses are certainly unique to each of them, but it’s fair to say that some of the general effects of Down syndrome make their lives, and ours, more difficult.
When my now-eight-year-old first joined our family in 2011, she struggled to eat and drink-—the result of a combination of low muscle tone plus unideal practices in her former orphanage. Family meals (and even snack times) were excruciating. Making sure she didn’t choke, helping her to learn to sip liquid (without having all of the water come spilling back out of her mouth), and easing her frustration around these issues was long, hard work. There was in-home therapy twice a week, but most of the time the onus was on us to help her get this figured out. Thankfully my other children were eager to help, quickly grew in their capacity for patience, and came to not bat an eye at the enormous mess both on and under the table. But it was hard!
And, the truth is that most folks outside of our home probably don’t “get it”. I’ve written before about the potential for loneliness and isolation when you’re raising kids with special needs, which you can read about here and here. The struggle, as they say, is real. When your child is having a tantrum, behaving in socially inappropriate ways, or unable to communicate clearly, it’s hard not to feel humiliated and frustrated. Parenting in general can certainly feel this way (any parent who’s worked up a sweat wrangling an angry toddler through Mass knows what I’m talking about!), but special needs parenting takes it to a whole new level.
So yes, Down syndrome is a big deal. Developmental delays can make home life, school bus rides, and social settings a bit more difficult. And parents raising these special kids are, always and forever, in the trenches. Amidst the victories and laughs and smiles, there are the inevitable tears and anxious thoughts, too. Please hear me when I say I’m right there with you, I see you, and I’m cheering you on.
But taking a step back, what can possibly be gained by parents, the medical community, or society, by murdering an entire class of people? Why are we talking about “eliminating Down syndrome”, when it’s just as common as ever, and when what we REALLY mean is “eliminating PEOPLE with Down syndrome”? That is what the headline ought to read. “Iceland is Eliminating People With Down Syndrome.” No scientist has developed a pill or a treatment to change the number of copies of the chromosome, or come up with a way to mitigate most of the effects. Instead, they are just killing people off. And then, you know, bragging about it.
If that doesn’t make your blood run cold, I don’t know what will.
We all want the very best for our children, throughout pregnancy and beyond. We seek quality prenatal and obstetric care (usually at great financial cost), take our vitamins, and hold our breaths for the entire duration of the 20-week ultrasound. And that’s normal—because no parent hopes their child will have significant medical issues or developmental challenges. But what happens when God blesses us with the gift of a child, and that child does indeed have a syndrome, or a congenital defect? What happens when life doesn’t turn out EXACTLY the way we planned or hoped? That is when, it seems, the rubber really meets the road for a mother or a father. This is also precisely when we have an enormous opportunity to love.
Jesus said that whatever we do for the least of these, so we do for Him. And so as Catholics, we must continue embracing, welcoming, and upholding the dignity of human life. Particularly when it comes to the least of these. We can and should speak out against the large-scale slaughter of babies with Down syndrome, and refuse to use the euphemisms so common in the media—this news story being the most recent example. Because the dark truth about the future of babies with Down syndrome in Iceland, and in the United States, is horrifying. And it’s high time we bring it out into the light.