Tiny Humans, Music, and Medical Ambiguity

His eyes were shut--then he heard Bach

Ben Baran

Jul 26, 2024

“What’s the smallest baby you’ve ever seen here?” I asked the neonatal intensive care unit (NICU) nurse.

“Three hundred grams.”

I did the rough math. Three hundred grams—that’s between 10 and 11 ounces.

“Yeah, she could fit in your hand.”

Could this child have survived? I didn’t ask but got the answer anyway.

“She’s like 5 or 6 now. And doing great.”

It’s been an interesting week.

My wife and I first toured this particular NICU about a month or two ago in preparation for the arrival of our then-unborn son. It’s a Level IV NICU, meaning that it’s set up and staffed to handle the most complex medical cases for newborns regardless of gestational age.

We knew then that our son would need such support. His concerns include a severe form of spina bifida and potential kidney issues, among others. He would need spinal surgery shortly after birth and a portfolio of various other types of monitoring and potential treatments.

Many of those concerns were evident in the imaging done prior to his birth. At the same time, the specialists we talked with also emphasized that it’s hard to know exactly what’s going on and how these issues may manifest themselves.

To ensure availability of these many specialists, we had planned on an induced birth on July 22. But life had other plans, and little Dominic arrived a few minutes before midnight on July 17. We got to see him briefly before he was whisked off for evaluation and to the same NICU we had toured previously.

The next day, he underwent more than four hours of surgery to close the myelomeningocele (an opening through which the spinal cord protrudes) on his lower back. It went well, and he was a sleepy little guy for the rest of the day. Fortunately, he was not born prematurely, weighing in at almost six pounds—a giant among some of his NICU contemporaries.

Musical Moments

We hadn’t seen his eyes open yet.

That was understandable, given that he was newly born and had been through quite a bit since then. But the following day, about 38 hours after he was born, I decided he needed to hear some music.

I took out my phone and pulled up the Baroque station on Amazon Music. The first piece available was the London Philharmonic Orchestra’s performance of Bach’s “Orchestral Suite No. 3 in D major BWV 1068: II. Air.”

I balanced the phone on one of the many medical devices around his incubator, the special crib for NICU babies, and pressed play.

Here’s the version that was on my phone. Below is a video of the Netherlands Bach Society performing the same piece.

In less than a second after the notes began, Dominic’s left eye opened, moving up and around—clearly responding to Bach.

Because he was recovering from his spinal surgery, he was lying in a prone position with his head turned toward his left side. That meant his right eye was necessarily pressed against the sheets of his bed. Otherwise, I think he would have opened both eyes upon hearing the tune.

Regardless, the music moved him.

This little human—less than two days outside the womb, likely still in some pain from his surgery, and almost certainly still bewildered by his new environment—was experiencing perhaps for the first time the arresting power of beauty. It awakened him, causing new neurons to fire and igniting for a moment a sense of wonder that I hope he never loses.

I continue to play music for him in the NICU, and he continues to enjoy it as far as I can tell. Here are 62 seconds of him reacting to some improvisational jazz by Aydin Esen.

The Fog of Medical Ambiguity

Prior to Dominic, my wife and I have had four highly routine and medically simple other children. We’ve known about Dominic’s conditions since March, and since then we’ve navigated a path through various levels and forms of uncertainty and ambiguity.

My wife endured numerous ultrasounds and two magnetic resonance imaging sessions, conducted at two of the best children’s hospitals in the United States. We’ve met with a slew of top doctors in maternal fetal medicine, neonatology, nephrology, and neurosurgery. We’ve discussed Dominic’s case in depth with those doctors.

And what strikes me from those conversations, those tests, and little Dominic’s trajectory is that despite the outstanding knowledge and skill and technology of modern medicine, there’s still a balance between certainty and uncertainty, between clarity and ambiguity. For example, Dominic clearly had myelomeningocele—an opening in his spine. He also clearly didn’t have one of his kidneys where it should have been.

But there’s plenty of ambiguity. We don’t know for sure what these and other conditions necessarily mean nor how they will change over time. For example, the jury is still out on whether one of his kidneys didn’t develop at all or if it became fused with the other kidney somehow.

The best we can do is to continue working with his medical team, provide him the support he needs as best we can, and pray for his health and recovery.

Although our situation is unique, it’s also not.

The specifics of what Dominic faces are a complex combination of issues, making our situation unique. But in a way, there’s a big piece of what we’re navigating that’s extraordinarily common.

Millions of people—maybe many of you reading this right now—have also experienced the fog of medical ambiguity regarding your own health or the health of someone else. You’ve seen the specialists, had the tests, ridden the roller coaster of diagnoses and prognoses. You’ve heard probabilities expressed in different ways, learned about different potential outcomes, and read about promising new advances that might change the game for you or a loved one.

And yet the uncertainty and ambiguity remains. Sometimes that’s a source of hope because things sometimes do turn out better than expected. We fully expected that Dominic would be on dialysis by now, but he most certainly doesn’t need that at the moment. Sometimes that uncertainty and ambiguity is a source of frustration and annoyance, as we all may face real decisions with limited or squishy information.

Sometimes the decisions we have to make are not between something desirable and something undesirable; they’re between something bad and something awful. Sometimes it’s a tradeoff between one set of unknowns and another set of unknowns.

So what are we to do in these circumstances?

Are there any helpful ways to think about them?

It seems that there are. In these types of murky situations where obvious answers seem hidden, social science seems to highlight at least the importance of knowing your values and using them to guide your decision-making process. A few years ago, I interviewed the cognitive psychologist Neil Shortland on the podcast that I co-host. In that episode, Neil put it this way:

What I always say to people is that you have to know your values and be guided by your values. Because if you make a decision that violates your values—because you prioritized someone else's values—you are the one that's going to suffer … I'm not saying every decision but the extreme decisions that truly test your values. That's the link that we're seeing with a lot of people [who suffer] moral injury, trauma, and just struggling to live with the decisions that they've made. And that's as important as making a decision … being able to make it, be OK with the outcome, good or bad, and live with it. And a lot of that comes to be guided by your values.

I think the same might be true in the foggy times even when you don’t face decisions. Sometimes you just have to sit with and embrace the ambiguity and uncertainty. It seems that a strong sense of what matters most helps then too, as does one’s faith and having trusted people around you for support.

Furthermore, as I’ve argued elsewhere, it’s helpful to think about one’s values well before you find yourself in a crisis. The unexamined life might be carefree, but when you have to make tough calls that matter, knowing what you stand for and knowing what’s important for you makes a big difference.

That’s not to say that clear values necessarily make everything clear or certain. Far from it. Yet they do help by providing a foundation from which to make decisions and chart one’s way through the fog.

In a weird way though, times of medical ambiguity provide a type of clarity—not about the medical situation itself, but about the things in life that really matter. Priorities shift suddenly, and tasks thought important on a Wednesday afternoon are forgotten before midnight.

And regardless of what’s on our calendars, the tiny humans—in tiny beds under the watchful care and expertise of many caring professionals—strive onward, showing us in nearly every minute both the fragility and resilience of human life.