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Dying Young : A Crisis Of Tragic Dimensions Unfolds Every Day At The Nation's Largest Children's Hospital

July 12, 1992|MICHAEL D'ANTONIO | Pulitzer Prize-winner Michael D'Antonio is a free-lance writer based in New York City. His last article for this magazine profiled sociology professor Amitai Etzioni and communitarianism

New technologies allow doctors to save many of these babies. One of the most important employs a chemical invented at Children's that imitates the lining of the lungs. Without this substance, premature babies, whose inelastic lungs could not transfer oxygen to their blood, died of respiratory failure. Today, it is common even for "fetal infants" weighing less than 1 1/2 pounds to survive and eventually leave the hospital. Indeed, America leads the world in high-tech medicine and spends more per capita on medical care than any other country.

"But the technology still makes a lousy uterus," says Pursley, who wears a yellow surgical smock over a blue, button-down shirt and tan pants. He is just under six feet tall with broad shoulders and a strong physical presence, a stark contrast to the tiny patients he treats.

Pursley says he is concerned about preventing low-weight births in the first place, but unfortunately, the trend is moving in the opposite direction. As he starts to explain, Pursley steps outside the unit, away from a young couple in sterile surgical gowns who are gingerly caressing their tiny baby girl. The baby, who looks like a tiny, pink, wizened old man, wears a knit cap and a little diaper.

"Drug use is one cause," Pursley says, once he is in the hallway. Doctors estimate that nearly 20% of babies born in America's major cities are affected by their mothers' drug use. Babies born with high levels of drugs in their bodies can suffer permanent nerve and brain damage. While social stereotypes suggest that drug-affected infants are born only to poor, inner-city women, the facts are otherwise. Pursley treats drug-related problems in babies born to middle-class suburban parents as well as those born to poorer urban couples. And he insists that drugs cannot account for the majority of low-birth-weight babies. The chief cause, he says, is poor maternal health and inadequate prenatal care.

"What I'm more concerned with is the fact that of two women who are 12 weeks pregnant, it's the poor, inner-city mother who has a much higher chance of her baby being born underweight and dying before its first birthday," he says. Indeed, the 1989 infant mortality rate for black Americans--18 per 1,000--was about twice the rate for whites.

Pursley blames the sudden reversal of progress on cuts in programs aimed at poor mothers. Despite the boom sparked by Reaganomics, funding for maternal and child-health programs was cut by 34% in the 1980s. Migrant health centers lost 38% of their funding, while community health centers for the poor lost 24%. Both kinds of facilities provide prenatal and pediatric care. With the budget cuts, Pursley isn't surprised that infant mortality remains constant and the number of low-birth-weight babies is increasing. This contrasts with Western Europe and Japan, where all mothers receive comprehensive care, fewer low-birth-weight babies are born, and expensive intensive-care treatment is less common. According to the Children's Defense Fund, a national advocacy group for children, the difference between America's rate of infant mortality and Japan's costs this country an extra $7 billion annually in lost productivity.

Cost has become a serious issue here and in cities such as Los Angeles, where public hospitals have a limited number of units to care for premature babies and poor, uninsured patients may be turned away from private facilities. In those cases, hospitals perform a kind of triage, where babies may be discharged from neonatal intensive-care units ahead of schedule to make room for those in greater need of such care. A single day in a typical neonatal unit costs about $1,000 per child, compared to the average $1,000 total cost for the months of prenatal care leading up to delivery for a typical pregnant woman.

In Boston, where state regulations require that all patients get access to high-tech care in private facilities, Pursley concludes that the system isn't working. It addresses the symptoms but not the causes of low birth weight. And he says that once children are discharged, having received the world's best treatment, the system fails again.

"We do follow-up interviews with some of these kids' families over a number of years," Pursley explains. "We consider their potential for development, based on the medical condition they were in when they left the NICU (neonatal intensive-care unit), and we compare that with what we observe later on. In middle-class families with medical insurance, which means they get health care, these kids develop so well you can't tell the difference between them and normal birth-weight babies." But in cases where infants leave the intensive-care unit for poor homes with inadequate care, children quickly fall behind. "They just aren't as bright-eyed or healthy," Pursley laments. "We can't do anything here to deal with the deficits of these children who fall behind, but someone has to."

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