After we had our twin sons, we took pictures of them together and separately. The pictures taken separately always kept up a certain symmetry: If we snapped one twin propped on a couch, or in the bouncer, or resting his chin on his grandmother’s shoulder, we made sure to get the other twin in the same pose.
When it came to the customary baby bath tub picture, though, our twinned pictures differed in one significant detail. In one, but not the other, my wife has raised the washcloth so it covers the center of his chest.
Her discreetly raised hand hid a story. That story was written in a single line down the middle of our son’s breastbone, a still-fresh weld line of luminous pink: the scar from his most recent open-heart surgery.
Our twins are identical, but only genetically. Their lives diverged drastically months before they were born. The fetal heart begins developing two to three weeks after fertilization. By the fifth or sixth week, modern ultrasound machines can show that heart blinking in real time. As a radiologist, I documented fetal heartbeats routinely — and sometimes, tragically, the absence of one.
Our twins’ hearts initially looked the same. After they grew in utero, though, one twin’s heart began to look abnormal. His heart was beating, but the complex moving architecture of walls, chambers and tubes did not match the expected pattern.
After several more scans our doctors told us one boy, Savya, would be born normal but the other, Shiv, would be born with a severe congenital heart defect. His heart had never formed an outgoing connection to his lungs, so he wouldn’t be able to oxygenate his blood. This defect would require several open-heart surgeries and lifelong follow-ups. Assuming he survived at all.
The twins’ lives diverged even more drastically after delivery. Savya was carried to his mother’s arms within moments. Shiv was pierced with IVs, plastered with monitoring leads and rushed to the neonatal intensive care unit. Later, Savya slept in a quiet room, cradled by his mother. On another floor of the hospital, Shiv wailed inside a beeping, flashing phantasmagoria crowded with physicians, surgeons and nurses. His only sustenance was a small blue bottle of electrolyte solution, taken through a plastic nipple.
Over the next year and a half, Shiv would have three open-heart surgeries to patch the hole in his heart and create an artificial pulmonary artery. At age 3, an unexpected complication closed off his right lung, permanently cutting in half his ability to oxygenate his blood. While many children born with heart defects have only minor limitations, Shiv cannot play organized sports and gets easily winded.
The pediatrician’s growth chart eloquently mapped the divergence. Savya’s weight and height showed a swift upsweep and steady rise, the S-shape of normal growth. Shiv’s graph leveled off early and crept up only slowly, if at all.
My sons are identical twins, but their destinies have not been identical at all. On the nights when I cradled one twin in each arm and rocked them to sleep, I tried to face the fact of this inequality. I wondered how I would explain this to Shiv years later, if we were fortunate enough to have him, when he asked the inevitable question: Why me?
I had thought myself a religious person, but religious explanations seemed not just inadequate but unbearable. If the Creator was such a masterful artist, why did he do a slipshod job when sculpting an unborn child’s anatomy? If his all-powerful will controlled everything, did he mean for this to happen? And if it were intentional, could I forgive such a God, much less love him?
The idea of karma, too, had been dear to me once. Your actions over thousands of past lives affected what happened to you in this life. The universe was full of justice, and it was up to you, in this life, to endure the upshot of your past deeds — and shape your future by good works in this one. How empowering that idea seemed! Suffering was mere symmetry, and my future lives were in my control.
But now, faced with identical twins, both innocent, one suffering, karma seemed callous, cruel, cold. Did it matter what Shiv had done in some past life? He was here now, in this body, enduring this pain, and his suffering shamed divine will and karmic justice alike. In spite of these doubts and misgivings, my wife and I experienced a resurgence of faith, as so many patients and families do. Waiting for Shiv to emerge from each surgery, we found solace and strength in prayer.
The physician in me knew the medical explanation for Shiv’s condition. Genetics had nothing to do with it, since his twin was normal. The defect occurred. It just happened, and that was that. No larger idea justified the suffering or the inequality. Science’s answer to Shiv was just as callous as karma’s: Tough luck, kid.
My twins turned 12 this January. Shiv, nine years out from his third open-heart surgery, is approaching his fourth. The intervening years have had their challenges, from breathlessness on a nature walk to the endocarditis that cut short his summer vacation with a 104 degree fever. But the next surgery will be a far more ravaging test of his mind and body, requiring a longer recovery than any of his four cardiac catheterizations.
Even if he could understand his suffering, even if his suffering turned out to fit into the universe like a puzzle piece, that wouldn’t make enduring it any easier. If I could choose between explaining suffering to my son and equipping him against it, I would choose the latter. Wearing a Kevlar vest is better than knowing the physics guiding the bullet.
The first thing I will tell him is: Remember you are not alone. He will go under the knife alone, but he will never be alone. When the anesthesiologist pushes the plunger, Shiv will close his eyes at the center of a crowd: the parents, grandparents, brother, sister, aunts, uncles and cousins who wish him well. When he opens his eyes again, texts will light up dozens of phones on two continents. And from the very beginning of his life, he has had a best friend to help him fight this fight: Savya.
The second thing I will tell him: Don’t focus on your bad luck, focus on your good luck. Because everyone has some of both. If my son had been born a few decades earlier, or if he had been born today in any of a number of different countries, he would not have had access to fetal echocardiograms, cardiopulmonary bypass and advanced surgical techniques. He would have turned blue and passed away within days, perhaps hours, of his birth. Every movie night, every pineapple pizza, every road trip, and that day when, at 5 years old, he met his newborn sister for the first time: None of that would have happened.
The last thing I will tell him is this: Love who you are. If he could meet an alternate version of himself without his condition, a Shiv who never suffered, he would not recognize that boy. His father, too, would have been a different person. I feel some envy for that self — but also mild contempt. How shallow that other me would have been, how complacent, how fundamentally silly.
Love who you are, I will tell him, the way we love you. Go through what you cannot go around, and when you come home from the hospital and take that first hot shower, look down with pride at your sternotomy scar. That wound doesn’t just show the world that you suffered. It shows the world that you healed.
Looking back on my 12 joy- and anguish-filled years as a father, I have discovered the inadequacy of any one idea of life. Instead of relying on ideas as answers to questions, I have come to regard them as tools.
As a young doctor, I had no thought of divine intervention, karma, the soul, God or any theological scaffold for human existence. Radiology atlases, not Holy Scriptures, guided my interpretation of the scan.
Then that radiologist-in-training became a father-in-waiting. When I learned about the cardiac defect that threatened the life of my son, I slipped off my radiologist’s outlook like a pair of glasses. During intensive care unit vigils, prayer became a tool that gave our family strength. The tool I needed as a father was different from the one I needed as radiologist. I set one idea down and took up another.
Today, explaining the upcoming surgery to my preteen son, I share these tools with him as best I can. I give him tools to quell fear, to avoid bitterness and to build resilience. I tell him about the science behind the procedure, equipping him with knowledge. I teach him the musical Sanskrit prayers that his ancestors sang, equipping him with faith. I will send him into the operating room with all the ideas I can fit on his tool belt.
Because that is how I regard ideas now. Science and faith may seem to contradict each other. As a radiologist, believer and father, I have experienced them as complementary. One contradicts the other no more than a hammer contradicts a screwdriver. Human suffering is too vast, and human experience too diverse, for any one outlook to comprehend or justify it all. And so I am bringing together all my ideas, all my tools, to equip Shiv for what comes next. They will help him adapt and survive — and triumph
Amit Majmudar is a nuclear radiologist and the former poet laureate of Ohio. His newest poetry collection is called “What He Did in Solitary.”
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