From Tragedy Comes Strength --and a Special Friendship

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.

Here is what she wrote to me early on about her film: “My intention is to create a portrait of families’ impressions, reflections and insights, forging a broader connection with the amazing human capacity to find meaning and strength amidst crisis.”

Claire formed a company, Little One Productions. She first named her film “Shattered Expectations”--an appropriate title, but scary--and later, more optimistically, “A Chance to Grow.” In agreeing to air the film at 9 p.m. on Oct. 7, the Discovery Channel renamed it again. “A Baby’s Battle for Life” tells the stories of Zachary, Rami and Jake, three kids--and their families--who beat the odds.

With the consent of the parents, Claire shot much of the footage herself in her own unit at St. Vincent’s Hospital in Manhattan. After graduating from Georgetown, Claire studied film at New York University. Her sound and film work are sophisticated, but not so slick that they hide the daily rough edges of life in the NICU.

Frequently, the trajectory in the neonatal unit is compared to a roller coaster. Your kid’s way up and then--wham!--minutes later, there’s a rock-bottom crisis. But I prefer to liken the place to a parallel universe where the roller coaster is just one of the scared-senseless attractions.

Beepers screech constantly, suggesting that some baby may be having a life-threatening problem at that moment. The kids are impossibly small; and the equipment that surrounds them, enormous. You wonder, how can something so small be so perfectly formed? One day as a resident of this strange universe, and you can eyeball the babies and measure them in grams. Emily, 760 grams at birth, was considered big for her age.

With her experience and her empathy, it is unsurprising to me that Claire’s film captures all this. Deftly, she reveals the unscripted choreography between the nurses (who tend to know everything), the doctors (who often think they know everything) and the parents (who know nothing, except that they are terrified). Uncertainty rules the neonatal unit, and this, too, comes through. Dense, dangerous ethical questions are daily fare. What does it mean to save a baby who weighs less than a can of soup? What does it mean to that child’s brain and nervous system?

As Claire makes clear, it is hard to exaggerate just how topsy-turvy the experience is for families--or how life-altering. Kathy Servino goes off to give birth to Jake, a full-termer who ought to be just as healthy as Kathy’s other kids. She tells her mother, “Don’t worry, I’ll be back in 12 hours.” An undetected birth defect sends Jake to surgery and a three-month stay in Panke’s NICU. As Claire told me just last week, in more ways than one, Kathy never came back.

Jake is now 8, with learning difficulties the legacy of his sojourn in neonatal-land. Like this child who loves to sing, no one leaves the unit unchanged. I was in labor with Emily’s healthy, full-term brother Sam when my husband pointed to a bassinet and said, “Look, that’s where they’re going to put the baby.” My faith was more fragile. “Don’t be so sure,” I shot back.

Asking for Financial Help

To make her film, Claire wrote more grant applications than she can remember--and received more rejections than she cares to mention. She did scrub up a little foundation money--very little. She stuck out her palm to friends, family and NICU parents. Among the most precious donations were the $10 money order from one family, and the $400 check from her brother, a newly ordained Catholic priest.

One day, Claire e-mailed me that a nonprofit agency that served as a tax-exempt repository for funds raised by independent filmmakers had gone belly up, taking with it a huge chunk of her cash. While I read her message, my son was listening to a song called “If I Had a Million Dollars.” Tell you what, I e-mailed Claire, “If I had a million dollars, I’d give it to you to finish this film.”

Claire replied: “I’m moving forward, even though I don’t have all the money. This is either faith or insanity.”

No doubt it was both--along with tenacity, intelligence and honesty. On our VCR in his playroom, Sam and I watched Claire’s film together. He was fascinated, filled with questions. I was mesmerized. I wept, of course, and I cheered when Rami, unlike Emily, shook off a near-fatal bout of NEC. I laughed as Zachary’s mom, Keesha, learned to change minuscule diapers. (It’s a skill, believe me.) I wrote to Claire that I admired the fact that she was neither voyeuristic, nor soft-pedaling.

I also wrote: “One very important point that you drove home is that every family who enters the NICU passes through an invisible wall. On one side is the rest of the world, the world as those families once knew it. On the other side is Planet NICU. When Emily was alive, it was very hard to describe the intensity of that environment to people who had never been there. I wish they could have seen your movie.”

Claire--the woman of kindness and compassion whom I have come to know but have never met--hovers over every minute of this film. One big lesson that comes out: Life throws you curveballs. Not just premature babies. Not just premature babies who grow up with terrible compromises, or premature babies like Emily who never get the chance to grow up. Life hands everyone a curveball every now and then.

It’s all about universality, Claire and I have agreed through five years of e-mail messages. It’s about the frailty of assumptions and the unpredictability of this whole gig called life. It’s about the fact that not one day on this planet comes with a guarantee. Mostly, it’s about the precious privilege of bearing a child, and about loving that child every single minute that he or she is in your life.