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11/17/2009

Breathes life into

It hadn't seemed so serious that morning, when the NICU nurse called early to say we should be there.  Of course we'd go, I said, just like we did every morning, in time for his first feeding, just after morning rounds.  But she said we should get there soon.  She said there was a problem.  She didn't want to alarm us, but Charlie had an infection.

The signs of infection in preemies can be subtle, but the overnight staff had noticed that something was wrong with our baby.  In Charlie's case, he'd experienced more desats, dips in his blood oxygen saturation.  His color had been poor.  He hadn't cried and kicked when his diaper was changed.  They took a blood culture and started antibiotics long before they called us.

The doctors believed Charlie's central line — an IV catheter through which medication and nourishment can be delivered — had been compromised.  While we watched, a PA pulled it out, slowly and gently, what seemed like feet of spaghetti-thin tubing.  Charlie didn't move.  At three weeks of age, 32 weeks' gestation, Charlie was septic.

All that day we sat by his isolette, listening to his CPAP rig bubble, watching him slowly receive another blood transfusion, his third.  And what seems crazy to me now is that I really didn't know how sick he was.  It wasn't until a doctor said, "This is really tough...but we think he'll go home with you," that I understood he still might not.

Shot full of vancomycin, to me that night he seemed better.  He was angry now, screaming in protest as his vital signs were taken.  I thought this must be good, in contrast with his earlier stillness, but then he just...stopped breathing.

The nurse rubbed his feet, and he started again.  And then stopped.  Rub, then breathe.  Then stop.  Then rub, then breathe.  Then...stop.

I don't know how long we did that.  I know that we continued even as the doctor told us that it was troubling, this pattern.  That apnea was normal in preterm babies, but when it was tied to an illness it could be a problem, and when episodes occurred in a long string...  He didn't finish that sentence.

Rub, then breathe, then stop.

It's a feeling many new parents share, the conviction that if you don't watch every rise and fall of that inexperienced rib cage, if you don't breathe with your baby, then she won't know how to do it herself.  I breathed for Charlie that night, sitting by his bed, crying, eyeballs so swollen that it hurt to move them in my head, nostrils scrubbed raw by hospital paper towels.  Every gurgle of his CPAP happened, it seemed, because we willed it.  His breaths, when they resumed, were only because we worked for them when he couldn't.

Which isn't true, of course.  The tickle of the feet and the rubbing of the belly helped, but it was the drip of caffeine, the caustic burst of antibiotic, and the transfusion that eventually brought him around.  It was the science: serendipity and inspiration tempered by years of research and refinement, the careful observation and adjustment, a dedication that awes me.  My deep gulps of air did nothing, practically speaking, for Charlie.  All they did was keep me upright, somehow, next to the isolette.

...

I am thinking of the babies who don't have anyone to breathe for them.  The only time I ever heard our NICU nurses say anything negative about another patient — for all the lip service paid to HIPAA, in a small and open ward like ours, there weren't too many secrets — was when a baby came in, born early because of her mother's drug addiction.  The nurses, who were unfailingly warm and supportive to us, positively hissed when they spoke about this baby, so outraged were they by the circumstances of her life.  I'm sure part of what offended them was the mother's drug use, which seemed a preventable cause of the baby's preterm delivery, but they seemed angrier that no one ever visited her.  It's true that in all the time we were there, I never saw anyone there by her bed.  And I think sometimes of this baby and others like her, and I wonder, when they've been sick, who's stood by their beds and willed them alive.

...

I think, How impossibly sad that they should have no one to help them fill those fragile lungs.  But that's not right, because they do have someone.  There are nurses and doctors and PAs and volunteers, all of whom bring their own mixture of expertise and compassion to the ward, who fight passionately for the babies under their care.  And they have the March of Dimes.

People sometimes call children of ART miracle babies.  I suppose there's something to that metaphor, though I don't buy it completely; I believe more staunchly in the science of it.  What seems more miraculous to me than Charlie's conception is his survival.  It's thanks to the work of the March of Dimes that he and countless other babies have lived, have been able to breathe on their own.

Like many preterm babies, when Charlie was born, his lungs were immature.  They lacked surfactant, a substance that keeps the lungs from closing and collapsing upon exhalation, and couldn't stay open on their own.  The development of artificial surfactant therapy, funded by the March of Dimes in the 1980s, ushered in a tenfold decrease in the number of babies who die from RDS (respiratory distress syndrome).  Three doses of surfactant and five years later, Charlie's not only alive but thriving, the only artifact of  his prematurity an occasional touch of asthma. 

And to me, that's still not a miracle; that's science and luck.  The miracle is the generosity that makes it possible.  From the development of the polio vaccine to pioneering work in gene therapy, the March of Dimes has made lifesaving advances in research and practice through its supporters' contributions.  I feel humbled by those who volunteer or give or walk.  I feel staggered by our good fortune when there's still so much to do, so many babies who try but can't survive, so many children lost.  Every time I harangue my older son, that gorgeous wheezy complainer, that former 29-weeker, that obstinate rub-breathe-stopper, into sitting still to use his inhaler, I feel grateful for the gift.

To those of you who've given to the March of Dimes, thank you.  To anyone who'd like to help, please do.  And if you have something to say about how prematurity has touched your life, please tell us.  I'll contribute a quarter to the March of Dimes for every story shared.  (One comment per person, please.)

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