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From Tragedy Comes Strength --and a Special Friendship

September 20, 2000|ELIZABETH MEHREN | TIMES STAFF WRITER

This is a story about an ultramodern application of medicine and about a friendship that is just as up-to-date. It's about a tiny child who made that friendship happen, and about the 400,000 or more children like her who are born in this country each year. Premature children and neonatal medicine have a way of bringing people together. Just ask Claire Marie Panke--or me.

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It was five years ago that Claire and I first met. Except that we've never met. Claire is a neonatal nurse. I am a mother whose first child was born 12 years ago at 1 pound, 11 ounces, 15 weeks ahead of schedule. Claire works in a big New York City hospital, not unlike the place where my daughter Emily spent her 54-day life.

Claire and I are e-buddies, brought together by "Born Too Soon," the book I wrote about Emily, and about what happens when a family is thrust into the high-tech, high-risk galaxy of neonatology. Claire first contacted me the old-fashioned way--via snail mail. Soon we were trading e-mails, sometimes a half-dozen a week, and sometimes weeks of silence in between. I began with a passionate interest in Claire's work and in short order came to know a woman in her mid-30s who was living the kind of young-and-vital New York City life that sometimes makes those of us in the hinterlands feel old and, yes, envious. All this by way of a modem. I often thought about correspondents of generations past. Electronically, Claire and I gave any of them a run for their postage.

Truth in disclosure: Neonatal nurses are my heroes. If I ran the world, they'd make the salaries of investment bankers. I'm willing to bet that Claire and I would have bonded even if she hadn't been working on a documentary about grace and courage in a neonatal intensive care unit. In her first message, she asked me for suggestions and guidance for her film.

"This project excites me both as a filmmaker and a neonatal intensive care nurse," Claire first wrote. "The human side of health care has always offered stories of courage, drama and crisis, made all the more poignant when they emerge from the realm of the neonatal intensive care unit."

The NICU: Some people pronounce it Nickyou, making it sound to me like an outpost in the Yukon. In some quite real ways, it is--for it is a medical frontier and all the people in it, pioneers. It's a new country, still evolving, with its own strange customs and its own distinct language. After all, how many mothers greet their newborns each morning by smiling adoringly at a 2-pound human in a clear plastic box and inquiring about their saturation levels or gas and blood oxygen levels?

With continuing advances in fertility science and in the technology that saves premature and at-risk babies, neonatal intensive care takes on an increasingly crucial role in infant care. Nationally, up to 12% of all newborns, both premature and full-term, spend time in a NICU.

In a very different way than for their babies, the unit is for parents a life-changing experience. All your expectations are stood on their heads. If you are lucky--if your baby lives, maybe even thrives--you leave the hospital each day empty-handed. You and your husband watch proud, ecstatic parents parading their newborns through the same doors. They are carrying balloons and flowers and they are happily struggling to place their babies in strollers or car seats for the first time. You try not to stare. You are pleased for these fortunate families, and you hope they realize just how kind fate was in handing them a healthy, full-term child. Wordlessly, you and your husband wonder: Will that ever be us?

As Claire's project unfolded, I came to feel on some days like her e-mentor, and certainly, her e-cheerleader. I so admired her determination. There had been other films about prematurity but none made by a nurse from the trenches of neonatology. You can do it, you can do it, I kept telling Claire, not that she needed to rely on me for encouragement.

Claire has a big and full life, I learned: a gazillion friends, it seemed, loving parents and six siblings who must be the paradigm of support. Claire takes time to volunteer, spending a week each year at Paul Newman's Hole-in-the-Wall camp in Connecticut for kids with serious diseases. She spends her life taking care of other people's babies. What I discovered, as we passed into an oddly comfortable zone of electronic intimacy, was that the only thing missing was a baby of her own.

From a Parent's Perspective

We poured our souls out in electronic missives, and it occurred to me: Here was a chance to give back. Our baby died. As my then 12-year-old stepson put it, "she couldn't beat the bug," necrotizing enterocolitis: NEC (pronounced NECK), another charming NICU-ism. But we learned so much, and we promised Emily that what we learned would not be forgotten. Now, through Claire and her documentary, I could offer a view of how parents process the NICU experience.

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