Of Eugenics, Down Syndrome, and Defects of the Heart

The greatest challenge of the day is how to bring about a revolution of the heart.
~ Dorothy Day

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Of Autism, Prenatal Testing, and the Seventh Extinction

People say, ‘The price of genetic diseases is high. If these individuals could be eliminated early on, the savings would be enormous.’ It cannot be denied that the price of these diseases is high…, [b]ut we can assign a value to that price: It is precisely what society must pay to be fully human.
~ Jérôme Lejeune, French pediatrician, geneticist, and Down syndrome research pioneer

brain3_0ac27ea9c169f18cd259c0d38219c6cdCulture of life, culture of death – how big is the divide? Here’s one measure.

The other day I caught a story on NPR about researchers identifying genetic signals in utero of future mental illness. The following is a quotation from the transcript. Read it, and then jot down the first word that pops in your head:

Having a map like this is important because many psychiatric and behavioral problems appear to begin before birth, “even though they may not manifest until teenage years or even the early 20s,” says Dr. Thomas Insel, director of the National Institute of Mental Health.

OK, what was your word? “Provocative,” perhaps? “Fascinating,” or “Wow!” even?

How about “Abortion?” That was my first thought, and my wife reacted similarly when I I brought the story to her attention. If you’re committed to building a culture of life, I imagine that was your reaction as well.

But could it be that we pro-lifers just tend to be a bit paranoid? Could it be that my wife and I simply overreact to stories like this, discerning nefarious anti-life implications where none are warranted?

I don’t think so.

To begin with, it’s no surprise that the story itself is unabashedly rooted in abortion. The researchers obtained the brains they studied from four aborted fetuses, “a practice,” the NPR story notes, “that the Obama administration has authorized over the objections of abortion opponents” – you know, paranoid pro-lifers like you and me. So, even if the research does in fact lead to life-affirming therapies, it will be forever and inexorably tainted by it’s life-destroying origins.

And what of those potential life-affirming therapies? The NPR report is curiously silent on this point. Perhaps that is not unusual since this is ground-breaking research in its earliest stages. Nevertheless, there are telling gaps in the story where at least some speculation regarding future clinical applications would’ve been appropriate – maybe even expected. Take, for instance, this observation regarding autism, including a comment from Ed Lein of Seattle’s Allen Institute for Brain Science:

[T]he map shows that genes associated with autism appear to be acting on a specific type of brain cell in a part of the brain called the neocortex. That suggests “we should be looking at this particular type of cell in the neocortex, and furthermore that we should probably be looking very early in the prenatal stages for the origin of autism,” Lein says.

_65307055_autistic_boy-spl-1We all know that autism advocacy is very prominent these days, so shouldn’t a report on these exciting brain mapping developments include some kind of comment regarding the possibility of a prenatal cure? Instead, what follows in the NPR story is a discussion of how human brains differ from mouse brains, and how fetal brains differ from adult brains. The autism question is sidelined.

In a separate NBC News story, Lein held out a little more in the way of hope:

The findings are also in line with other research suggesting that early intervention can make a big difference for children with autism. “There’s converging evidence on a place in space and time where we should be putting our focus,” Lein said.

More hope for autistic children already born, yes, but still very vague with regards to prenatal implications – at least from the researchers’ vantage point. But those of us who follow such stories closely, the prenatal implications are all too clear: Once the genetic markers for mental illnesses like autism are identified and confirmed, and a test is developed that is cost effective from the heath insurers’ perspective, parents will be encouraged to screen their pregnancies accordingly, and babies destined for autism will be eliminated just as Down syndrome children are.

Does that sound crazy? Maybe, but it’s really just Margaret Sanger’s eugenicist dream come true. Sanger, the founder of what has become the international Planned Parenthood organization, was known to rail against those she labeled “morons,” “imbeciles,” and “mental defectives,” and she especially advocated for expanded birth control access for the lower strata of society in order to be rid of such persons. Sanger declared that “the greatest crime of modern civilization” was “permitting motherhood to be left to blind chance, and to be mainly a function of the most abysmally ignorant and irresponsible classes of the community.” And what Sanger wasn’t able to accomplish with birth control alone, her heirs are certainly accomplishing with prenatal testing and selective abortion.

And it’s not just mental illness and Down syndrome in the eugenicist cross hairs. Consider these sobering words from Nick Cohen writing in The Observer:

Suppose researchers claim to identify gay genes. Their discovery would be pseudo-science. A Gordian knot of environmental, cultural and hormonal influences would be as important in determining sexual preference. But there they would be on the web and in the text books: gay genes. Parents, who hated the idea of a gay child, could demand screenings and abortions. Why not? Parents who hate the idea of a daughter have unleashed a “gendercide” across China and northern India, where there are now 120 boys being born for every 100 girls.

age-dinosaur-bones-1The new research on fetal brain development is hot off the press, but we’d have to be naive to think that there aren’t people already thinking about how they can cash in on this new research – and I’m not talking about prenatal curative therapies. Let’s face it: Getting rid of a problem (in this case, human beings with a problem) is always easier (and sometimes more lucrative) than solving the problem itself.

Which calls to mind another story I heard on NPR – this time, about Elizabeth Kolbert’s recent book, The Sixth Extinction, in which she argues that, following on the heels of five massive natural extinctions, mankind is currently responsible for another ongoing global extinction of species that is as big as its predecessors, and could prove to be one of our most significant legacies on the planet.

Serious as Kolbert’s claims are, they pale in comparison to what some are calling a Seventh Extinction, in which man is projected to, in essence, wipe himself out.

Projection? It’s already happening. First, it was Down’s and girls; next it could be autism and other brain disorders; perhaps later, gays and lesbians; and then, who knows?

In any case, given the current penchant for cleansing the gene pool, it’s not a bad idea to be on guard, especially when your obstetrician starts talking to you about prenatal testing. And as far as the new fetal brain mapping is concerned, I like this comment from Brussels researcher Pierre Vanderhaeghen: “It’s always difficult to know what will come out of it.”

No argument there.

A version of this story appeared on Crisis.

Syria and My Boys

It’s appalling to me, appalling to me, that we spend two or three or four weeks debating whether to create a whole new category of war called humanitarian war, rather than dealing with our own problems and trying to solve them.
 ~ Rep. Alan Grayson, D-Fla.

Syria is suffering. The situation is dire; the stakes, high; the consequences of our choices, maybe catastrophic, maybe not. Who knows?

We get updates, analysis, and speculation around the clock, and from folks far more knowledgeable than me, so none of that here. Instead, I’m writing as a dad—specifically, a dad of sons. It’s my boys that got me thinking about Syria, and now I’m scared, sad, and angry.Syria-Civil-War

First, the scare. My 18-year-old recently sent in his Selective Service card, so he’s all signed up for the draft. I know that a draft is about as unlikely as a spontaneous peace in the Levant, but I still got spooked when he dropped that card in the mail slot.

The Pentagon routinely insists that they prefer an all-volunteer armed forces and that they don’t want conscripts, but Selective Service is still in business, and the laws compelling 18-year-old males to enroll are still in force.

Consequently, there must be some consideration in Washington that a draft may be necessary someday—that we’ll get embroiled in so many conflicts that there simply won’t be enough volunteers to fill the gaps.

The President promises us that there will be no “boots on the ground” in Syria, but once we drop the bombs, everything’s up for grabs. I’m scared because it looks like we’re going to get locked into yet another war at a time when young men (and women, for that matter) are in shorter and shorter supply. Could another war or two exhaust our stock of volunteers? Is a draft possible?

Even if a draft is only a remote possibility, I want our country to stay out of the way of other people’s wars as much as possible. That’s not isolationism; that’s just a dad talking. What’s happening in Syria is horrendous, but it’s happening in Syria. I grieve for Syria, and I pray for Syria. Nevertheless, I would not want my own son to have to kill and risk being killed on behalf of Syria. That’s just the plain truth.

Then there’s sadness. My 13-year-old is a football fanatic and a dedicated student of the game. And when I say student, I don’t just mean stats and records and scores. He’s really a student of play-calling and game-planning—a self-taught tactician, and an astute observer of strategy. He loves to play on the field, but he also loves to play in theory, and he’s never more animated than when trying to explain to me why some quarterback or coach did what he did.

His passion for tactics and strategy makes me think he could excel in the study of military science. That, along with his disciplined character and respect for authority, might incline him to pursue a future in the armed forces. But I would never encourage him to enlist—not now anyway.

The men and women rising to the political top these days—the decision-makers, both Republican and Democrat, who send our troops to war—show an appalling lack of judgment regarding the use of  military force. I don’t trust any of them to make prudent, lawful decisions about when to put our sons and daughters in harm’s way. The politicians have got an abysmal track record, and I’ve strongly urged my children to avoid enlisting in any capacity.

Finally, the anger. My nine-year-old son is an eager third-grader who loves to read, ride his bike, and hang out with his friends. He also has Down syndrome, which makes him a statistical survivor. About 90% of babies with Down’s are aborted in this country. It might even be higher than that. It certainly is higher than that in parts of Europe.

The chemical attacks and indiscriminate slaughter taking place in Syria is rightfully condemned. It’s awful and sickening. It has to stop. The same could be said for the attacks on the unborn and the slaughter of innocents that legally takes place in our own communities every day. Then there’s euthanasia and mercy killing. Then there’s capital punishment. All human life is sacred. Killing is always a tragedy. Our outrage and sorrow extends to every occasion when human life is intentionally targeted and cut short.

popeBut returning violence for violence only perpetuates the madness. There must be another way. There must be.

This evening, I ask the Lord that we Christians, and our brothers and sisters of other religions, and every man and woman of good will, cry out forcefully: violence and war are never the way to peace!
~ Pope Francis


A version of this story appeared on Catholic Exchange.

Naming Our Prince

The press and paparazzi were on pins and needles: When would the royal baby be born? How long would the labor take? Would all go well? And, of courprince georgese, the all important question: What would his name be?

George, it turns out. My money was on Edward, but Prince George it is—long live the king!

Naming rituals are important to commoners as well, and every family has its own approach. We always consulted the Catholic calendar to see if a due date coincided with a favorite saint’s feast. Whatever names were proximate to the due date—male or female—were fair game.

Well, maybe not every name.

We always ended up with a “probably not” list in addition to the favored “A” list. For example, when we found out we were pregnant with our sixth child, we determined that he’d be born in mid-October sometime. “How about Hedwig, honey?” I asked my wife after glancing at the calendar. “She’s on the 16th. Or Ignatius, on the 17th?” I knew Nancy’s naming limits—long ago she had made it clear that no son of hers would be named Bruno (or daughter for that matter). I was crushed. What dad wouldn’t want a son named Bruno? But I acquiesced, and Nancy retained the name veto in perpetuity.

Back to our sixth: Teresa, perhaps, if the birthday was the 15th? Or Luke if it was the 18th? What about the 19th—one of the North American Martyrs, maybe John or Isaac? We waited and pondered: Who would this child be?

There was nothing unusual about the pregnancy itself, and everything was in order when Nancy approached (and then rolled by [also not unusual]) the due date. Nesting was complete, supplies were at hand, and the bed double-layered and prepared. (No swimming pool, however. I was stubborn and skeptical, so Nancy didn’t get her water labor until Katharine, our seventh. But that’s another story.)

Labor commenced the night of October 16, and Lynn arrived at the ready shortly after I called her, although it seemed like forever—another “not unusual.” Time flies and stands still during a birth. It’s as if everything slows w-a-a-y down, but it all speeds up, too. Weird.

Anyway, labor progressed as normally as the pregnancy had. (Note: I realize I’m taking a liberty [as a man] in using the words “normally” and “progress” in reference to childbirth—or even talking about childbirth at all—and I acknowledge that Nancy should be telling this part of the story, for she did all the work [and marvelously, heroically so, as always], but this will have to do for now.) At some point in the wee hours of October 17, Nancy made that final push, and our baby was born—a boy! Alleluia!cececenick

He pinked up right away, and let us know he was breathing by letting out a squeak or two—no bellow or wail if I remember correctly. As Nancy cuddled with him and assisted him to latch on for the first time, the three of us settled down to get acquainted. Lynn was nearby attending to Apgar scores and the placenta. At some point, we woke up Ben, our oldest, to come meet his new brother and cut the umbilical cord.

Yet, something wasn’t quite right.

For one thing, Lynn was a bit hesitant—not her typical modus operandi during a birth, I assure you. And our baby had certain physical features that were out of whack somehow: Ears too low, for instance, and almond-shaped eyes.

Lynn finished tidying up and took leave to go chart. I broke the silence in our bedroom: “Is he alright?” Nancy answered, “I don’t know,” and then, after a brief pause, “It looks like he has Down’s.” I followed Lynn downstairs to ask her.

Do you know Lynn? Let me tell you about Lynn. She was our midwife for our last five births—prenatal care, labor and delivery, and postpartum care—so we got to know her pretty well. I can tell you without any reservation that Lynn is an extraordinary person—not just a great nurse, but truly an extraordinary person, with a soul full of tenderness and love. Those qualities were particularly important that night in October.

Extensive experience and training enabled Lynn to see immediately that our newborn son had Down syndrome—something the Apgars only reinforced. But she said nothing; she did nothing different. She went about her work as professionally and unobtrusively as she’d done throughout our previous three births with her.

And when I showed up in the kitchen with my question? She didn’t mince words—I greatly appreciated that. “He has Down’s, Rick,” she said. Simple as that—although I think her eyes were welling up a bit. Mine were, too, I’m pretty sure. In any case, I hightailed it back up to Nancy to fill her in, and we both wept over our boy.

They weren’t tears of disappointment though, or tears of anger or regret. And Lynn knew that. She knew that we welcomed our baby son no matter what—without question, absolutely, and no exceptions. This wasn’t a messed up order from Land’s End or Amazon, for God’s sake, so no thoughts of “returns” or customer complaints. He was our child, after all; and not just a child, but the very child we’d been waiting for and praying for. God had bestowed on us as an inestimable gift, and we were grateful and delighted.

Nevertheless, Down’s did present some challenges, even that first day outside the womb. There was the possibility of serious heart defects to begin with, and we had to get him a hearing test as I recall. Plus, a definitive diagnosis required a blood test, and that was important to get done right away as well. After a generous interval to allow us to process everything, Lynn gave us the lowdown on what we needed to accomplish ASAP—like an echocardiogram to rule out life-threatening heart problems.

Back up for a moment and consider this line: After a generous interval to allow us to process…. Our new gift from God wasn’t whisked away by strangers to get tested and poked and prodded; no awkward silences or downcast eyes in response to parents’ questions and pleas, “Where is our baby? Is he OK?”

No. A generous interval to get to know our new son in all his glorious particularity—just like any new baby. Home birth—and, in particular, home birth with Lynn—made it possible for a hard situation to be truly humanized. The Down syndrome was a surprise, for sure, and we knew we had a steep learning curve ahead of us. Moreover, we knew our boy (and we with him) would be facing difficulties and battles our other kids never faced. But…so what? He was our boy, and he was fiercely loved from the very beginning. Lynn knew that and incorporated it into her care.

1091154_221445288005265_569329236_oOh, and the name? As noted above, October 17 is the feast of St. Ignatius—not an option.

Instead, we chose Nicholas Matthias. Nicholas, for the patron saint of children, i.e., Santa Claus! And Matthias? Ben (the umbilical-cord-cutter) had lobbied for that name because of his favorite Redwall character, but that wasn’t the clincher. Instead, we chose it in honor of St. Matthias the Apostle, the one that took Judas’ place after the Resurrection—the one they chose by casting lots. The Eleven had narrowed it down to Matthias and another guy named Barsabbas, and Matthias lucked out.

In fact, it’s because of that selection method that some cultures consider St. Matthias’ feast the luckiest day of the year—the best day to gamble or buy lottery tickets.

I don’t know about that, but it’s certainly true that Fortune smiled on us that night in October. The Creator, the King of the universe, entrusted us with another beautiful child—indeed, a prince! Like every baby, this baby was the latest edition of God’s own image of Himself, the image of the King in our midst.

Nothing could alter that. Nothing. Deo gratias!

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