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Front porch: Mother savors life of ‘boy who lived’

We have a Harry Potter at our house. He’s not a wizard and doesn’t wear glasses. But he does have an amazing scar, and he is also “the boy who lived.”

Eight years ago, Sam entered the world in the same speedy fashion as his three older brothers. Fifteen minutes after our arrival at Holy Family Hospital, our 9-pound 9-ounce bouncing bundle of boy arrived.

However, we quickly discovered something was badly wrong. While our baby seemed alert and robust, his chest labored with every breath. After I held Sam for a few minutes, he was whisked away. Less than an hour later, he was aboard a helicopter and on his way to Sacred Heart Medical Center.

The diagnosis: congenital diaphragmatic hernia. Our newborn was given a 50/50 chance of survival. A hole in Sam’s diaphragm hadn’t closed early in gestation. As a result, his internal organs pushed into his chest cavity, squashing his developing lungs. Only Sam’s right lung was fully formed, and immediate surgery was his best chance.

Dr. Michael Barsotti, medical director of Neonatal Intensive Care Unit at Sacred Heart Children’s Hospital, said Sam’s condition is quite rare. “We only see maybe one to four cases a year.”

Our son was placed in a medically induced coma while doctors fought to stabilize him. Twelve hours after Sam had been taken from my arms, I hovered beside his bed in a room reserved for the sickest of babies. Tubes and wires protruded from the top of his head to the soles of his tiny feet. The ominous whooshing of the ventilator and the beeping and whirring of machines filled the room. He was so fragile that the sound of voice raised above a whisper sent his blood pressure skyrocketing.

I stood next Sam, unable to help him, unwilling to leave him, undone by the thought of the empty cradle that waited at home.

When he was 3 days old, he underwent surgery in his room in the NICU. Dr. Randall Holland pulled Sam’s intestines and organs into his stomach cavity and repaired the hole in his diaphragm.

And then we watched. And we waited. And each day brought small triumphs. Medications were decreased, his little lung began to function, his intestines did what they were supposed to do. The NICU became our second home, and we grew to admire the compassionate, dedicated team of doctors and nurses who staff it. As Barsotti said, “We intervene in what is supposed to be the most joyous time for a family. It takes special nurses to do this job.”

When Sam was 10 days old, I got to hold him again. He sleepily opened his blue eyes and gazed at me as if to say, “There you are.” I looked up to see staff members gathered around. Their eyes were wet. A doctor whose name I’ve since forgotten watched us for the longest time. He started to leave then turned back and said, “This is why we do what we do.”

Finally, three weeks after his birth, on a golden October day we took our son home. He was breathing on his own, without supplemental oxygen, able to nurse, and didn’t need any kind of medication. According to Barsotti, a three-week hospital stay for a baby with a condition this serious is “a very good outcome.”

If you ask Sam about his scar he’ll say, “I was in the hospital, and they cut me open. They took my guts out and squeezed them back in, and sewed me shut. Then, God grew me another lung. Now, I can breathe and be a better person.”

This year as we celebrated his eighth birthday, I cheered him on as he ran across the soccer field with his team. I curled up with him and listened to him read the latest “Hank the Cowdog” book. And later, from our living room window, I watched him emerge like Lazarus from a tomb of leaves, hoping to scare his brothers.

The trauma surrounding Sam’s birth has faded over the years. But gray autumn mornings prompt memories. And those memories make me grateful when my own Harry Potter wakes me with a kiss, or a cuddle or a demand for breakfast. I think about what he survived to be here. And I’m reminded once again, life is precious – savor it.

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