Of Bad Hearts, Broken Hearts and Holy Hearts
“I will give you a new heart, and put a new spirit within you...” (Ezekiel 36:26)
I read with interest Amy Dockser Marcus’s recent Wall Street Journal story about the tension between new genetic technologies and old eugenics. “Gene editing offers the prospect of finding cures for intractable diseases,” she writes, “but it has also raised concerns that it might one day be used to engineer humans who are more intelligent, beautiful or athletic.”
You might read that sentence and be tempted to ask, “Why not?” I mean, who wouldn’t want to be more intelligent, beautiful, and/or athletic? And, what’s more, what parents wouldn’t want those things for their kids?
The irony, of course, is that we’ve been engineering those attributes for decades, but not through genetic manipulation. In fact, the manner in which we as a society – not just here in the USA, but globally – have been attempting to purify and optimize the human race is stunningly similar to the Third Reich’s Final Solution: first, identify so-called inferior populations; second, exterminate them. Wipe them out. Solve a problem by annihilating it.
As is well known, the Nazis carried out this genocidal horror through a government policy of mass internment and slaughter, but we’ve adopted a more clinical approach these days. Prenatal testing and selective abortion is the contemporary eugenic methodology of choice, and it’s not only fully legal, but also socially acceptable – even desirable.
Admittedly, it’s a negative approach to eugenics rather than a positive one, but it’s still highly effective. Iceland, for instance, is rapidly freeing itself of an entire class of citizens by means of this approach. “My understanding is that we have basically eradicated, almost, Down syndrome from our society,” says Icelandic geneticist Kari Stefansson. “There is hardly ever a child with Down syndrome in Iceland anymore.” And it’s all done legally and voluntarily. Nobody is compelling Icelandic moms to get rid of their Down’s babies. They’re choosing it.
This is in keeping with the mentality that is hoping for a brave, new world of positive eugenics based on modern genetic techniques. “We live in a consumer culture,” says Yale historian and eugenics researcher Daniel Kevles, “and people want the best for their kids” – even if, as is currently the case, that means taking a scratch and starting over if you don’t get the kid you want.
But let’s say the genetic wizards succeed in coming up with proven and “safe” means of altering the chromosomal identities of our preborn children. Let’s say they can tinker with our babies in the womb and take away Down syndrome and other fetal anomalies. Wouldn’t that be a good idea? Wouldn’t we want our babies to be healthy?
Consider, though, that it’s not outright “health” concerns that cause up to 90% of prenatally diagnosed kids with Down’s to be “terminated.” You see, people with Down’s are healthier than ever, and their life expectancy is fast catching up to the general population. My son, Nicholas, is a prime example. Sure, he has hypothyroidism – a common health problem associated with Down syndrome – but he’s been doing fine since he started on a thyroid supplement when he was a tyke. Now that he’s a teenager, I don’t even have to administer it to him. “Did you take your pill this morning, Nick?” I’ll ask as he’s grabbing his backpack and heading out the door for school.
“Yes,” he’ll eyeroll back at me, just like any other teen would. “Of course!”
And then there’s his heart.
Our Nicholas was born at home, and our prenatal care didn’t include ultrasounds or blood tests, so we didn’t know Nick had Down syndrome until he arrived. We didn’t love him any less, of course – he was our beautiful, newborn son! So happy, so wonderful – every birth is truly a momentous occasion, isn’t it? Each one a glorious reminder of God’s outrageous confidence in us (as a couple, as a world) that he’s willing to entrust us with yet another of his living, breathing self-portraits. Another imago Dei in diapers – diapers that we’ll have to change, that we’ll get to change!
Nonetheless, the apparent Down’s diagnosis did represent a steep learning curve for us as parents, and we knew we’d have to shift our vision for his future – something that commenced the very morning of his birth. “Babies with Down syndrome are at higher risk for congenital heart defects,” our midwife told us, “so you have to get an echocardiogram right away.”
That’s how it was that we arrived at our pediatrician’s office on a cool October morning with our hours-old baby swaddled in numerous blankets. After a preliminary exam, the doctor sent us over to the hospital for the scan, and it showed that Nick’s heart did have some of those characteristic problems our midwife was worried about – an extra hole here, an atypical connection there – although the cardiologist determined that Nick was stable enough to wait on surgery until he was a bit older.
So, we brought Nicky home his birth-morning, and he was feted and welcomed into the hubbub of our household with the usual ceremony. There’d be time enough to navigate the Down’s implications, but for right then we were simply relieved that he was OK and not in any immediate danger. Our other children celebrated his arrival, took turns holding him, crowding around to coo over him. In other words, Nicky became simply the newest member of the gang, and we looked forward to getting to know his gifts and quirks and unique personality just like we did everybody else.
And his heart? Yes, he did require open heart surgery a couple months after his first birthday. Those anatomical problems I mentioned led to significant cardiac insufficiencies that we didn’t detect until Nicky started nodding off at odd moments – even after a good night’s sleep, even in the middle of playtime with a sibling or therapist. “Pulmonary hypertension,” is what the doctor told us. “There’s blood backing up in the lungs.” It was urgent enough that Nick got a STAT ambulance ride down to Riley Children’s Hospital in Indianapolis for expert intervention.
A catheterization procedure confirmed our cardiologist’s working hypothesis, and heart surgery was scheduled for the next day. We were frantic, of course, and prayed like mad – and reached out to others to pray with us. Plus, we leaned on those others to assist us with our other children at home in South Bend as we scrambled to keep on top of all the details regarding Nick’s surgery and recovery. Imagine our relief when Dr. Turrentine, Nick’s cardiothoracic surgeon, finally arrived in the waiting area and approached us with an update. “Everything went fine,” he told us, “and he’s recovering in the PICU.”
Phew! Deo gratias!
Thirteen years have passed, and he’s still doing fine. Indeed, if you happen to meet our Nicholas (and it’s an appropriate venue), be sure to ask him about his heart surgery. He’ll break into a wide smile, and proudly lift up his shirt to show you the tiny, tiny scar on his chest. It’s the best free advertising that Dr. Turrentine could ask for – not only the small scar, but primarily the smiling, wonderful boy who is thriving and starting eighth grade and anticipating his Confirmation this fall.
But let’s circle back now to the eugenics question with a couple observations. First, as I’m trying to illustrate with Nicky’s history, he’s fundamentally healthy – Down’s or no Down’s. As you’d expect with any child, Nick’s actual health issues have been addressed and are being managed, and the same will apply to anything else that might come up in the future – like other characteristic Down’s complaints such as leukemia and, much later, Alzheimer’s disease. The predictability of these potential problems is one of the reasons Down’s kids are living so much longer than they used to, not to mention medicine’s increased ability to intervene successfully.
Thus, it’s not the potential for actual health problems, not the higher risk or even inevitability of such problems, that result in Down’s babies being targeted for termination. Make no mistake: It’s the Down’s associated developmental delays – what we used to call “mental retardation” – that has led to our modern eugenic assault. Parents who get a prenatal Down’s diagnosis “feel a sense of loss because they no longer dream that their child will get married, go to college or start a family of their own one day,” writes bioethicist Dr. Chris Kaposy – “in other words, that they will not meet the conventional expectations for the perfect middle-class life.” Kaposy points out that “hopes and dreams of perfection might be a strong motive for parents to choose abortion,” even though many Down’s kids do grow up to do all those things that parents dream about and more.
But even if such kids don’t get to live those dreams, they’re still beloved for who they are, and this leads to a second observation – one that you might’ve anticipated after reading the title of this meditation.
Back when Nick was a baby, we worried about what was apparently wrong with his physical heart, and we’re so grateful that those problems have been corrected. Yet there’s never been anything at all wrong with his emotional heart – with that part of him that adores his brothers and sisters, that loves to play Mass in our stairwell, that weeps with those who weep and laughs with those who laugh, that genuinely likes and enjoys everyone he meets. He’s an accomplished drummer, an experienced ham on the stage, and an indefatigable Notre Dame fan. He has emotional ups and downs, struggles with some school subjects but not others, and a full range of interests and aspirations.
And, yes, he has some particular Down’s related challenges – but how could you possibly tease those out from who he is and who he is becoming? Who’d want to? “Thou didst knit me together in my mother’s womb,” writes the Psalmist. “Thou knowest me right well…. In thy book were written, every one of them, the days that were formed for me, when as yet there was none of them.” These words apply to Nick and others with genetic anomalies as much as they do to the rest of us, whose life challenges might not surface until after we’ve had a chance to be born.
“The greatest challenge of the day,” wrote Dorothy Day, “is how to bring about a revolution of the heart.” As we steel ourselves to grapple with the prospect of a genetically enhanced future, we’d do well to worry less about the hearts of others and more about our own.