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Preemies mean tough choices

Life with children
by: courtesy of Eric Bartels, Errol Bartels spent his first four months at Legacy Emanuel Hospital and Health Center in 2001.

No matter how many people thank Larry Cheldelin for saving the life of a child, he knows he's not God. His job is helping others forced to play that role.

Cheldelin is one of 18 neonatologists at Northwest Newborn Specialists in North Portland. His expertise is babies born early. Sometimes very early, and weighing next to nothing.

The good news is that, relatively speaking, there aren't that many of them. The statistics say fewer than 1 percent of all babies born are categorized as 'extremely low birth weight': less than 1,000 grams, or about two pounds.

Some of these newborns, of course, cannot be saved. But advances in medicine over the past couple of decades have allowed Cheldelin and others in his field to keep many of them alive.

'Fifteen to 20 years ago, they didn't survive,' he says.

The tricky part is the kids who survive only to face lives complicated by significant disorders. That puts some harrowingly difficult choices in front of parents.

'Our goal, from a medical standpoint, is to have parents make informed decisions,' Cheldelin says.

On a recent afternoon, on a computer in his West Hills home, Cheldelin enters data: gestational age, birth weight, gender, single or twin, and whether there's been time to administer critical corticosteroids to the mother, which help speed up lung development.

A consensus has emerged, he says. At 26 weeks - 37 weeks is considered full-term - a baby has a realistic hope for a healthy life. There is no question about providing care, although it will be intensive.

Conversely, he says, babies who arrive at less than 23 weeks' gestation have little chance.

'Under 23 weeks, survivability is essentially nil,' he says.

That leaves a very tender three-week window, where all manner of considerations come into play.

'Under 26 weeks, if both family members were not willing to do extraordinary care, the majority of us would support that decision,' he says, 'because the long-term outcomes are so poor not just for the baby, but for the family.'

Cheldelin has seen families disintegrate under the strain of raising a child with disabilities. He's also seen the miraculous. He remembers a premature infant who was rushed to the hospital one cold December, having been delivered in the front seat of a pickup truck.

'Twenty-three-and-a-half weeks, he came into the emergency room without a heartbeat,' Cheldelin says. 'This kid was like an icicle.'

The child didn't just survive, he says - 'he lived and was completely normal.'

Sadly, Cheldelin also notes that economics are increasingly a factor in the decisions parents must sometimes make. Costs can be astronomical and health plans inadequate to cover them.

How does one choose between bankruptcy and the life of a child? Cheldelin removes his glasses, wiping the corner of an eye, as he recalls a family that brought in a frozen side of pork to help pay its debt.

Decision was dad's

None of this would mean as much to me personally if Dr. Cheldelin hadn't once helped me play God.

I sat with him and another doctor at North Portland's Legacy Emanuel Hospital the morning my son was born, at less than 24 weeks, just over a pound and a half. The boy had a 50-50 chance of surviving, I was told. My wife was deeply sedated. The decision was all mine.

I got as much information as I could from the doctors, but the choice wasn't really that hard. The child had already arrived, I figured - we'd do the best we could.

Needless to say, we were in for some difficult times. Errol spent four months in neonatal intensive care. The expert attention he received was obviously our essential line of defense, but family and friends also rallied to the boy's side.

My Auntie Kawehi, who is full-blooded Hawaiian, sent my father back from Honolulu with the spiritual protection of a ti leaf, which hangs in our kitchen to this day. Errol's incubator was decorated with an American Indian dreamcatcher provided by my friend Tom, who grew up Jewish on Manhattan's Upper East Side.

And every time I visited the boy, sometimes after long shifts at work that ended in the small hours of the morning, I'd kiss his tiny head and promise him that, if he'd just get himself home from the hospital, I'd look out for him from there.

The intensive care didn't end once he got home. For months, my wife endured a routine of switching him from one oxygen tank to another just to move him out of his bedroom for a change of scenery, and he slept at night attached to a machine that reminded him to keep breathing.

When, at about 2, he was sent to the hospital with a scary case of pneumonia, a respiratory therapist told us he would never fully recover from the effects of coming into the world before his lungs were fully developed.

Later, developmental specialists said the motor skills deficits that plagued him would also be a lifelong legacy. But over time, often in fits and starts, he managed to stay fairly close to the curve.

We've never looked back

On Friday, Errol turns 7. Yes, he's distractible, manic at times and too often distressingly heedless of his surroundings. He's stick thin, kind of pale and more than a little klutzy.

But he's also personable and funny and wildly imaginative. He's a phenomenal reader, and his steel-trap memory lets us count on him to remember names and addresses that the rest of us have forgotten.

He also loves his mildly off-color Captain Underpants books and science fiction movies and has a pretty silky left-handed swing with the wiffle ball bat.

And I still kiss him on the head every night.

I've never once regretted the decision I had to make, but now I'm troubled by Cheldelin's report about the new economics of preemie care.

While Errol was in the hospital, we watched the odd thrust and parry between provider and insurer, offers and counteroffers that made us wonder about the real costs of products and services. His bill came to roughly $500,000.

The number meant little, because the insurance we had at the time paid for nearly all of it. But what if it hadn't? What if someone had told me that, in addition to the uncertainties my family was facing, I would have to risk everything financially?

That's a choice I feel blessed to have avoided. Because I'm only human.

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