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My Child’s ‘Catastrophic’ Birth And The Emotional Journey That Followed

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As a long-time journalist who had reported from war zones and natural disasters, I had absorbed my share of images that most people would prefer not to see up close. In Cambodia in the early 1990s, I interviewed a man who had lost all 4 limbs to a land mine, his stumps wrapped in grimy bandages and his torso covered in buzzing flies, as he lay in a primitive hospital bed. In Thailand after the Indian Ocean tsunami, I walked through a makeshift morgue where hundreds of engorged, misshapen bodies lay across the ground for the inspection of people seeking loved ones. I thought to myself, This is what a person looks like after being immersed in seawater for 24 hours.

Now, I was about to learn what a baby looks like after just 5-and-a-half months in the womb. This time, I lacked the distance that insulates journalists from the tragedies in which we insert ourselves in pursuit of a story. This was my child.

Though my wife’s due date was in late January, here we were in the hospital on an early October morning. Our daughter had somehow arrived, cut out of my wife in an emergency C-section performed minutes after our terrifying scramble to the hospital. I had arrived by cab from the airport, where I had been seconds from boarding an early morning flight when Deanna called from our apartment to report that she was in excruciating pain, and struggling to care for our 13-month-old son.

But this was not a miscarriage, even as it felt nothing like a birth. It was a surreal purgatory between life and death.

Given that Deanna’s pregnancy had been entirely free of complication, I initially downplayed the danger. But in the grey dawn on the ride to the hospital, as I replayed in my mind the agony that had been in her voice, I shifted to another mode: self-preservation. I told myself that this was probably a miscarriage. We had a gorgeous, rambunctious, healthy baby boy who in no way left us feeling short of daily wonders. Maybe we would have another kid; maybe we wouldn’t. Either way, we would be okay.

But this was not a miscarriage, even as it felt nothing like a birth. It was a surreal purgatory between life and death.

At delivery, our daughter weighed less than 2 pounds. This I had learned as I held my wife’s hand while the emergency surgery was performed on the other side of a curtain drawn at her waist. I felt like I was underwater, huddling there, hearing the muffled sounds of the doctors and their obscured undertakings. There was hushed talk of resuscitation. In the moments after, my wife — still reeling from shock and anesthesia — tilted her head toward me and managed one coherent question: “Is she alive?”

Now I was going in to see my daughter for the first time. The attendant buzzed me into the neonatal intensive care unit — the NICU, everyone called it, as if I had been initiated into a secret society with its own code. I put on a hospital gown, then walked past rows of humming machinery bathed in blue light, attached to babies watched over by efficient nurses.

Peter S Goodman premature baby

A nurse beckoned me to one station, and there she was, a smidgen of a person encased in a glass box, with tubes snaking into her mouth, into her chest, and wrapped around her limbs. She was so tiny and unformed that it was hard to read her as a baby. It was impossible to experience her arrival as an event to celebrate; this did not feel like the beginning of anything that could lead to happiness. Yet the nurse instructed me to take pictures so Deanna could see her, too.

I leaned over the incubator and took in a breath. I looked tentatively at her purplish skin, bruised and chafed and not fully solid — “gelatinous,” one of the doctors would say later. I paused at her ears, misshapen and still forming in a way that was normal for this stage of her development — 25 weeks into the usual 40 week term — but underscored the horrifying nature of our situation: What the hell had happened to us? And what lay ahead?

I snapped the shutter a couple of times as if I was collecting evidence from the scene of a terrible accident.

Some of the nurses congratulated me, and I recoiled as if they were mocking me, cognizant that this creature might die within days. If she lived, she might be blind or unable to walk. I knew the nurses meant well and did not want me to miss out on marking the beginning of my child’s life, so I strained to offer what smile I could muster.

I thought, “You should be seeking the community of other men to salute fatherhood. Just not me.”

Other fathers stood over their own stations, their normal looking babies lying in the same type of glass bassinet our son had occupied just after his own birth barely a year earlier, in this same hospital, on his due date. These babies were perhaps a few weeks early — scary for their parents, no doubt, but with a solid hold on their lives. A bearded guy sought eye contact and put out his hand for a high-5. “Congratulations!” he said. I forced myself to touch his hand and say it back. Yes, I thought, you should indeed be overjoyed, reveling in the arrival of your baby. You should be seeking the community of other men to salute fatherhood. Just not me.

Back in Deanna’s recovery room, we studied the images of our daughter in stunned silence. The senior neonatologist arrived to illuminate our situation with some data: Our daughter faced a two-thirds chance of survival, and 40-percent odds of severe disabilities ranging from cerebral palsy to mental retardation. The doctor described her birth as “catastrophic.”

I did not know if we were even rooting for her to live. Might we all be better off if she did not make it, confronting a life that afforded no chance at basic satisfaction — perhaps confined to an institution, or a wheelchair? What would happen to our delicious boy as his parents descended into morose sadness?

Deanna and I took turns breaking down and comforting the other with what meager material was available — just the knowledge that, whatever was happening to our family, we were in it together.

Peter S. Goodman premature baby

The doctors and nurses kept urging us to pick a name. This baby had arrived so early that we had only begun the name conversation a week earlier. We had sketched out a dozen provisional options with no presumptive favorite. Now, we willed ourselves to settle on one. A name made her real, which only deepened the pain, but it also presumably helped cement her as a fully fledged person among the nurses in whose hands her tenuous existence now lay.

One name now resonated — Mila — but what did it mean? One website we consulted said it meant “rival; emulating.” Whatever. Another meaning read “friendly, soft, pleasant,” not the sorts of qualities we sought for our daughter. Still another website listed the definition as “miracle.” We rejected it. Talk of miracles felt saccharine and trite. We were facing a dire medical emergency, not some cause for mystical nonsense. But then we stumbled on still another meaning — “dear one.” Mila it was.

I wheeled Deanna into the elevator, then up to the NICU. A kindly nurse stood over our daughter’s incubator. A nametag dangled from her neck: Mila. It was short for Milagros, which meant miracle. Incredulous, we gasped. Despite our initial reaction, how could we dismiss this sign?

I could tell you that this was the moment when it all started to turn toward okay. But that would be bullshit. We endured months of gnawing fear and uncertainty over Mila’s fate amid blood transfusions, breathing tubes, feeding tubes, head ultrasounds. We got late night calls from the NICU about a collapsed lung, an intraventricular hemorrhage. Every time Mila slipped toward the brink, she somehow fought her way back.

Only now, with Mila coming up on 3 years old, can I celebrate her birthday as the day she was born.

Even after we brought her home, Mila by then looking like a beautiful newborn, a fundamental anxiety about her prospects remained. And even as our fears gradually subsided and conventional joys became ours — Mila managed to breastfeed, she rolled over, she smiled, and eventually crawled and walked, each of these milestones feeling enormous — we still lived with the knowledge that nothing was guaranteed for her future.

The fear I had seen clearly from day one. What took me by surprise was the deepening sorrow I felt over what Mila had endured. Back when it was all first happening, I had stolen refuge in the unreality of it all. If we lost her, we had never really known her, so we could mourn the idea of her and move on with our lives. But as she grew into our girl — our lovely, spunky, fierce and challenging girl — our elation and gratitude was tinged with sadness over the suffering that had defined her first months. It hurt to realize how I had distanced myself from her in a reach to spare myself and my family pain.

Only now, with Mila coming up on 3 years old, can I celebrate her birthday as the day she was born. The day her life began. The day she began mounting a recovery that does indeed seem miraculous, notching her place alongside the commonplace miracles presented by every child who, despite the odds, manages to find their way into the world.

Peter S. Goodman is the Global Editor-in-Chief of the International Business Times and an award-winning reporter and columnist. To learn more about the remarkable story of Mila’s birth, and the surprising controversy that surrounded it, read the new book Girl In Glass: How My “Distressed” Baby Defied Odds, Shamed A CEO, And Taught Me The Essence Of Love, Heartbreak, And Miracles.

Girl In Glass by Deanna Fei