In the Wake of Parkland

What has happened the past 40 years or so to produce a society so ill at ease with itself, so prone to violence?
~ Peggy Noonan

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Alone If Necessary: Of Nicea, Nixon, and Nerve

I do not care very much what men say of me,
provided that God approves of me.
~ St. Thomas More

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Of Down Syndrome, Anne of Green Gables, and Van the Man

You can’t stop us on the road to freedom
You can’t stop us ’cause our eyes can see.
Men with insight, men in granite,
Knights in armor bent on chivalry.
~ Van Morrison

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A Celebration of Katharine and Geriatric Pregnancy


Whatever the statistical realities may be, the number of those who choose abortion after a prenatal diagnosis is far too high. It should be none.
~ Mark Bradford, Jérôme Lejeune Foundation USA

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Why We Need HB 1337: A Story

sedem and nick

Synchronicity can be so ironic. Take the confluence of two events in my life recently.

First, the other morning, my daughter Joan sent me word about an effort her friend organized to raise awareness about (and funds for) Sedem, a Ghanaian boy with Down syndrome who requires heart surgery – just like Joan’s little brother, Nick, who also has Down’s and who required heart surgery when he turned one.

Later that same afternoon, I got an email alert about House Bill 1337 which, among other things, promotes alternatives to abortion for kids like Sedem and Nick. Governor Pence supports the bill, and apparently he’s getting hassled about it from doctors and pro-choice advocates.

So, on the one hand we have college students advocating for the poor and most vulnerable, doing what they can to help those who are still marginalized in our world, even in this enlightened age. On the other hand, we have those who claim that some poor and vulnerable – kids with Down syndrome for example, kids like my Nicky – don’t deserve a chance at life. That the world is better off without them. That the easiest way to deal with their challenges is to deny them the light of day.

Ironic, don’t you think? And the contrast between the two groups is sad. So sad.

Those of us who love people with special needs – and who are loved by them – know that the group opposing HB 1337 is simply wrong. Governor Pence, stay strong. The bill makes sense, and you’re right to support it, no matter the political fallout.

A version of this letter originally appeared on the St. Joseph County Right to Life website. Governor Pence signed HB 1337 on March 24, 2016, and the law now states, “Indiana does not allow a fetus to be aborted solely because of the fetus’s race, color, national origin, ancestry, sex, or diagnosis or potential diagnosis of the fetus having Down Syndrome or any other disability.”

Nick’s First Two-Pointer (with assists)

I need someone to set a pick for me at the free-throw line of life.
~ Cheech & Chong

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Of Catholic Schools, Down Syndrome, and Hospitality

Julian of Norwich

He willeth we know that not only He taketh heed to
noble things and to great, but also to little and to small, to low and to simple.

For He willeth we know that the least thing shall not be forgotten.

~ Dame Julian of Norwich

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An Ambassador at Our Lady’s University

Hard weekend for Irish fans – at least football-wise.

It’s been tough enough that a season launched with such promise could falter and fall so abruptly, but there was at least the hope – an assumption even – that the team would land a win for the seniors’ last home game.


Even so, there’s more to Notre Dame than football – if you’re a true fan, you already know that. So, for all you true fans smarting from our team’s recent losses, ville.0here’s a happy story from last Saturday to ease the disappointment.

My family and I have been Irish fans long before my oldest, Ben, matriculated this fall at Notre Dame. He’s doing well and keeping busy – we rarely see him even though we’re mere minutes away. Still, we always know he’ll be in the stadium for home games, and we have fun trying to pick him out when the cameras pan the student section.

This past weekend was different because a friend surprised me with a pair of last minute Louisville tickets on Friday afternoon. “It’ll be rainy,” she said, “but not as cold as it was for the Northwestern game.”

I assured her that weather was not an issue, and I gratefully accepted her kind gift on behalf of my family.

Like I said, we’re big fans, but we don’t get to many games on account of (cough, cough) “budgetary constraints.” However, over the years, thanks to occasional splurges and the generosity of others, we’ve managed to get most of our kids to a home game or two – with the exception of our two youngest, Kath and Nick. Kath is only eight, so she’s just now at an age when she’d appreciate the game day experience – we’ve got plenty of time to make that happen yet.

Nick, on the other hand, is already eleven, and he’s the fiercest ND fan of us all (with the possible exception of my wife). He roots and hollers and whoops when we score – “GO IRISH!” he roars ferociously whenever there’s a pause in the revelry. No question: Nick was going to his first home game.

Saturday morning, we deliberated as to who’d take him. Nancy was up for it and reluctant to pass up the opportunity, but she had some work to finish up that evening. I lucked out.

“Nick, guess what?” I asked him. “We’re going to the Notre Dame game today, you and me!”

1383871_10152804864518686_1764748065031248725_nHe was confused – go to the game? Like…go to the game? I told him it was true, and that we’d probably get to see his brother there as well – maybe even sideline reporter Jeff Jeffers, whom we know from church. Nick’s one word response (accompanied by a fist pump): “Yes!”

After lunch, we bundled up and grabbed a heavy woolen army blanket – just in case. Nancy dropped us off on Eddy Street, and we joined in the hoopla as we made our way to the stadium parking lot. We’d made arrangements to meet Ben at Legends, and it was a happy reunion when we saw him coming our way.

“Hey, Nicky!” he yelled. “You going to the game today?” Nick ran into his arms. We chatted a bit, and then Ben took our picture with his phone.

“Classic,” he commented.

“Be sure to send it to me,” I replied. He promised.

By then, Nick was ready for some stadium fare, so we said goodbye to Ben and headed to the gate. Once inside, it was hotdogs and popcorn and Sprite…and then another hotdog, even before we started migrating to the stands. I got a little confused about our section number, and we ended up in a line that wIMG_20141122_142633ould’ve put us in the student section. Before I realized my mistake, we approached a young woman distributing miniature gold pom-poms. “Hey, Nick,” I said as came up, “you can get a shaker for the game!”

“Sorry, sir,” she apologized, “they’re only for students” (pause, glance down at Nicky), “but I have one for him.”

Now, understand that my Nicholas has Down syndrome, and we’ve discovered you can tell a lot about people by how they respond to him – almost like he’s a character barometer. I mean, how can you look at a kid like Nick and not melt? You’d have to be pretty callous – the kid’s pure love. Maybe that ND student-worker would’ve made a pom-pom exception for any eleven-year-old making his way into the stadium, but I like to think that she was especially motivated by Nick’s particular Down’s shine.

And it was the same when we were entering the stadium and buying our grub – smiles, beaming smiles all around at Nicky. And likewise when we got to our seats: Whereas I was just another ticket holder with a bulky down coat, Nick…well, Nick was more, especially during the national anthem.

“Don’t forget to put your hand over your heart,” I reminded him.

“No, papa,” he said soberly, as he formed his fingers into a salute. “I’m a Cub Scout, so I do this.” More beaming smiles all around.

It’s like he was an ambassador, and people changed when they saw his beautiful face – they lightened, they softened, they mollified. Even into that first quarter on Saturday, when the score went lopsided against the Irish so early, Nicky helped us keep it in perspective. After all, he was so happy just to be there! He was in Notre Dame stadium, and there was the marching band, and there was #5 – Everett Golson himself! – right down there on the field.

Score? What score?

Special needs’ kids and Notre Dame have a pretty tight relationship. I know that many ND students get involved with South Bend’s Logan Center in various ways, not to mention Hannah & Friends, founded by former ND coach Charlie Weis, as well as Sharing Meadows in nearby LaPorte County. Those are all excellent programs for the students, but Nick’s reception on Saturday illustrates something beyond programs – something about Notre Dame’s culture itself. marthaartworknd_landmarks

It’s a culture that we also saw on freshman orientation weekend last August as we attended events as a family with Ben. The students, the staff, the other anxious parents, and the volunteer alumni – everyone noticed Nicky. My wife especially observed it at the picnic dinner in the South Dining Hall on Saturday. The smiles, the looks, the whispers of delight.

That says something about Nick, of course, but it also says something about Notre Dame. It’s a place that seeks to form its members to be welcoming and receptive, especially of those less fortunate – the opposite of the “throwaway culture” that prevails today according to Pope Francis. The Holy Father’s remedy is exactly what we’ve observed at Our Lady’s University, at least when it comes to our Nick: The building up of a “culture of encounter, solidarity, and hospitality” toward everyone, especially the most vulnerable.

What with the rain and the long walks up the ramps to our seats, Nick was pretty much ready to go home before the half. We said our goodbyes to those seated near us, and we headed out of the stadium to the bookstore where Nancy was going to pick us up.

“Well, Nick, your first home game experience,” I said as we walked. “What was your favorite part?”

“The food,” he replied without hesitation. “And seeing Ben.”

If you ask me, it was the smiles. I guess it’s all in the perspective.


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.

Of Honest Labels and Down Syndrome

Can a mother forget her infant,
be without tenderness for the child of her womb?
~ Isaiah

Driving home from the hospital after late clinicals recently, I stopped at a 7-Eleven for a snack. I wasn’t particularly hungry, but I wanted something to munch on to help me stay awake. Cheddar flavored Chex Mix looked tasty, so I made my purchase and hit the road again. The open bag sat next to me on the passenger seat, and I grabbed handfuls from time to time as I listened to late night radio chatter and finished my journey.

CCChexmix06By the time I’d gotten home, about 3/4 of the bag was gone – I guess I was hungrier than I thought – but, hey, Chex Mix has “60% less fat than regular potato chips” according to the bag, so I was probably breaking even, nutritionally speaking.

Anyway, I didn’t think about it much until the next morning when I heard Allison Aubrey’s NPR story about the FDA’s new, more realistic food labeling regulations. She used ice cream for an example, pointing out that the nutritional data on current labeling can be based on a half cup serving size – a half cup! I know, right? Who eats a half cup of ice cream? Allison comments:

I mean it wouldn’t even fill half of this mug here and it’d be up to a half cup, so most of us eat a lot more than a half cup. The new label will set a standard for the ice cream serving: one serving equals one cup, which is a lot closer to what we eat.

The story made me chuckle until I remembered my snack for the road the previous evening. I dug the empty package out of the trash and examined the label. That “60% less fat” claim? It’s based on a serving size of – you guessed it – a half cup. Then I did the math. According to the old FDA guidelines, my late night nosh was closer to being a meal calorie-wise. In fact, the FDA would’ve had me sharing that single little bag of Chex Mix with an additional two and a half people! Am I a pig or what?

So, three cheers for the FDA! Under their new rules, my Chex Mix bag would’ve provided me with significantly more candid insight with regards to what (and how much) I was jamlabel-reading-girl-HP-610x300ming down my pie hole. No doubt, it wouldn’t have made a whit of difference in terms of the outcome (that is, I probably would’ve consumed about 3/4 of the bag anyway), but it might have, and that’s the point. Sure, sure, caveat emptor – “let the buyer beware” and all that. Yet basic trust is at the heart of our economy’s compact between consumers and producers, and misleading product information is no better than information that is blatantly false. In fact, misleading information is worse: It’s harder to detect and account for.

All of this reminded me of another NPR story that had just aired the day before the one about FDA labeling. This one was by Rob Stein, and it was about a new prenatal blood test that is proving to be highly accurate – and much less risky – than the standard procedures for diagnosing birth defects.

Until now, checking for fetal abnormalities involved a hit-or-miss hormonal blood test that regularly produced false positive results. Consequently, additional testing was required, including ultrasounds, but usually a more invasive test as well – either chorionic villus sampling (CVS) or amniocentesis. Both of these exams involve obtaining a intrauterine sample, and then scrutinizing it for subtle signs that something is genetically amiss with the baby.

Amniocentesis and CVS are highly accurate when it comes to diagnosing chromosomal fetal abnormalities, but both tests are risky. They require inserting an instrument into the uterus – either a needle through the abdomen or a tube through the cervix – and that means potential harm to the baby, and possibly even a miscarriage.

The new procedure – dubbed “verifi” (sic) by the manufacturer – changes all that. It’s still a maternal blood test, but instead of checking hormone levels, it isolates bits of fetal DNA that circulate in the mom’s bloodstream and correlates them with estimated gestational age. Too much DNA? A chromosomal anomaly like Down’s is suspected. A recent study published in the New England Journal of Medicine (NEJM) confirms that Verifi is a highly accurate test – about ten times more accurate than the old blood tests.

pregnancy blood test 300Verifi is not infallible, however, and a positive result would still require CVS or amniocentesis to get any kind of certainty. Still, the Verifi prenatal blood test greatly reduces the chance of false positives, and so it has the potential for slashing the number of women who feel compelled to get the more dangerous invasive procedures.

Sounds good, right? Prolife even, in a way.

In keeping with the FDA’s renewed vigilance with regards to candid product information, let’s dig a little deeper and check the label – or, rather, its equivalent on the Verifi website:

Shed much needed light on the chromosomal health of a developing fetus with the reassurance of reliable answers only the verifi® prenatal test provides. [T]he verifi® test delivers accurate genetic information safely, non-invasively,… [a]nd all of this vital knowledge can be yours in as little as 1 week’s time. Now that’s reassuring, enlightening and empowering (emphasis added).

Reassuring, enlightening, empowering. It’s right there in the Verifi ad copy. Let’s consider what meaning those words convey.

To begin with, Reassuring. That can only refer to negative Verifi test results. Based on the manufacturer’s claims and the NEJM study, expectant moms who get those negative results can be pretty confident that their babies are developing normally, and no further tests – invasive or otherwise – will be required.

Enlightening? That must be in reference to the quick test result turnaround and it’s accuracy. Obviously, the women getting these tests are hoping for a negative result, but even if it’s positive, it’s reliable information that was previously unattainable, and it’s provided quickly.

Which brings us to the third descriptor: Empowering. For insight as to what Verifi means by empowerment, we can look further on the website “label” – like this question from the website’s FAQs page: “I don’t have an increased risk for Down syndrome, but I am really worried about it. Can I have this test?”

That’s a clue to the real agenda of Verifi, although it’s otherwise barely discernible on it’s online label. The brutal truth is that Verifi is intended to refine the targeting of Down syndrome for elimination. It’s generally acknowledged that about 90% of babies diagnosed prenatally with Down syndrome are aborted, although that figure is somewhat controversial. Still, does it matter if it’s 80% or 50%? Even 1%? The fact is that our culture and our healthcare system have decided to eradicate Down syndrome as if it were a virus, and tests like Verifi provide an elegant (and profitable) means of furthering that end.

Down syndrome is still commonly referred to as a “birth defect,” and organizations like the March of Dimes still pay lip service to the idea that identifying 253140_10151294010543973_1933169162_nDown syndrome prenatally can allow the parents time to “prepare medically, emotionally and financially for the birth of a child with special needs, such as arranging for delivery in a medically appropriate setting.” But who are we kidding? Even the March of Dimes know that most families, when faced with hard news, will “consider the diagnosis and their options” – and when they say “options,” is there really any doubt that they mean “termination” in most cases?

Here’s the deal when it comes to Down syndrome and prenatal testing, especially since positive results so often lead to abortion: We’re not fixing a problem, but rather getting rid of the people who have the problem; we’re not reducing the incidence of a disorder, but rather reducing the sample size; we’re not curing a syndrome, but rather killing those who have the syndrome. And is this really going to make the world a better place? Is it just? Is it civilized? Isn’t it really a kind of genocide?

In the end, it does come back to inaccurate labeling, but not just the labeling on prenatal tests. More importantly, it’s the grossly inappropriate “defect” label that we insist on attaching to children with Down’s and similar conditions. No wonder our society is inclined to get rid of them!

In contrast, consider these words of Dr. Brain Skotko, a Harvard geneticist, who offered an alternative vision in the NPR story:

People with Down syndrome are artists. They’re poets. They’re athletes. Their lives are happy ones and fulfilling ones. I have a sister with Down syndrome who certainly is a life coach, for not only myself, but for my entire family. If the new tests become a routine offering, then we have to start to ask: Will babies with Down syndrome slowly start to disappear?

Pray for those with Down’s – they are not defective. Pray for their parents, their families, their friends. The world needs these witnesses to the truth that all human life is sacred and intrinsically precious – from the moment of conception, and regardless of chromosomal variation.

And with regards to Verifi and prenatal testing? Caveat emptor.


A version of this story appeared on Crisis.

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