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Professional Corner

Preemies: Baby Doe law creates miracles — at a cost

Part one in a series

Your baby is born four months premature, weighs one pound and is deaf, blind and missing half its brain — a human thing that previously would have been allowed to die. But now a little known law insists your doctor keep the baby alive.

Miraculously, over the next six months, it survives operation after operation, all without painkillers. You love the child. It is yours. The government that willed it alive says its crushing costs are yours as well: hospitalization, day care, special education. Now multiply your little miracle by the quarter of a million critically disabled children brought to life since the law was passed. The tittle miracle is yours. The shame is ours.

By Mark Hunter The American

There were times when Carol Castellano wondered if her daughter would have been better off dead. A "super-preemie" born in 1984 after only 23 weeks in the womb, Serena is one of more than a quarter of a million disabled children who owe their lives to ink: The Baby Doe legislation of 1982-84, which made it a crime for doctors to do less than the maximum to keep even the least tenable infants alive, many condemned to years of pain and misery.

But these quarter-million children who would have been left to die before Ronald Reagan signed them alive. All would become a burden on their families, a burden made all the more onerous by the lack of government support. The same government that willed them alive, willed them crippled and would heartlessly abandon them and their families. Like so many others in this unnoticed, unreported population, Serena would not have survived the delivery room only years earlier. Like so many others, Serena survived to suffer.

Born blind, brain damage prevented her from speaking or chewing, and pulmonary and abdominal abnormalities required six operations in her first eight months — not one with anesthesia.

"If I'd had some way of knowing what (extremely premature) babies endure, I wouldn't have wanted my baby to go through that," says Carol Castellano, president and cofounder of New Jersey Parents of Blind Children. "I adore my daughter. Fd never wish her away But if I were in premature labor, I wouldn't go to a hospital. I'd stay home and let nature take its course."

Mother and daughter were among the first to be caught in a wave of radical change driven by dramatic advances in medical technology, and by fierce competition for prestige and profits within the burgeoning field of neonatology — the medical specialty devoted to the tiniest babies.

Swept up in this wave are doctors ambitious to save children's precarious lives, parents who question the wisdom of these efforts, and the children who are lifelong victims.

The impetus for these changes was a little-understood but far-reaching federal mandate — the Baby Doe regulations of 1982-84.

They began with a national scandal that erupted in Bloomington, Ind., when the parents of an infant born with Down syndrome and an operable but life-threatening condition elected to withhold surgery As a local prosecutor and right-to-life groups petitioned the courts to force treatment and lost, President Reagan directed the Department of Health and Human Services to create rules to ensure no infant ever again would be denied care.

By 1984, the Child Abuse Prevention and Treatment Act had ordained that aggressive treatment of premature infants must be given, regardless of the prospects of future disability or the wishes of parents. The only exceptions: unless the provision of such treatment would be virtually futile in terms of the survival of the infant, (and) inhumane."

To ensure that doctors erred on the side of life, posters went up in hospitals, offering a hotiine number to anyone who believed that a baby who might survive was being denied treatment.

At best, these laws have spawned half a miracle. Largely due to the resultant advances in neonatology, U.S. infant mortality — the percentage of babies who die in their first year reached an all-time low in 1995 (the last year for which data are available) of 7.9 per thousand.

Even more striking is the increase in the number of survivors of premature birth. According to the National Center for Health Statistics, in 1980 —before Baby Doe took effect — about 36,000 live births involved infants born at a "very low birthweight" — under 3 Ibs., 3 oz. (Five lbs„ 8 oz. is considered minimum normal birth-weight.) In 1995, there were over 52,000 such births — a 44 percent increase, while the overall number of births rose only 24 percent. And nearly half of those babies were in the "extremely low birth weight" to an oxygen tube shortly after the cost of Natalie's birth to ind other disabilities, category, under 2 lbs., 2 oz. According to Dr. William A. Silverman, one of neonatology's founders, few of these miracle babies of the popular press — super-preemies — would have survived only two decades ago.

Yet the number of disabled survivors has also reached a record level — as one study describes it, an "unavoidable side effect of the increasing success of neonatal intensive care."

Of the 25,000 tiniest babies, between one-sixth and one-third will be severely disabled as a consequence of failure of their immature lungs, liver or other organs. Another one-fifth to one-third will suffer what is termed "mild" or "moderate" disability, anything from mental retardation and partial blindness to behavioral or psychological disorders.

These statistics do not even suggest the true scope of the problem, says Dr. Lucille Perrotta, a New York neonatologist. "It's probably closer to 100 percent," she asserts. "They all need services when they go home. A lot of pediatricians don't want to take care of these babies. They're difficult, time-consuming. They get sick a lot".

The toll is heaviest among the most remarkable survivors, those bornafteronly22or23weeksinthe womb at weights of a pound or less, now routinely "saved" in neonatal intensive care units.

Dr. Ronald Hoekstra of Children's Healthcare in Minneapolis notes that of the 50 percent of his hospital's 23-weekers who survive, a full 29 percent are severely disabled.

Hoekstra is proud that he has saved seven 22-weekers born at his hospital since 1991, a survival rate that is actually among the best in the country. However, among those seven babies, the toll is startling: "One is normal, one is mildly disabled, three are severely disabled, and two are open to question," he said.

Since aggressive neonatal care was nationally mandated in 198244, between 240,000 and 430,000 disabled babies have been brought into the world, according to Dr. Patricia Shiono, director of research in epidemiology at the Center for the Future of Children In Los Gatos, Calif. Definitive statistics are unavailable because many hospitals do not follow up on survivors of neonatal intensive care.

This much is certain, says Jonathan Muraskas, assistant director of neonatology at Chicago Loyola University Medical Center: "We're creating a new population."

And this population is growing. Dr. Michael West is a researcher in special education and rehabilitation at Virginia Commonwealth University in Richmond, and a consultant to school systems. "I'm seeing more kids with more health problems — liver diseases, lung, heart disease," he says. There are more children born with health impairments — mental retardation and physical disabilities. Before, a lot of these kids were allowed to die naturally.

"I do struggle with this, and I don't have the answer," says Dr. Marilee C. Alien, a neonatologist at Johns Hopkins University School of Medicine in Baltimore. I think what I'm supposed to say is, "Of course we should do whatever we can to help the baby survive. In practice, that's what I do. But I despair when I see parents so overwhelmed by the business of living with a disabled child."

Is half a miracle better than none? Fifteen years and a quarter-million disabled children after the federal government mandated aggressive treatment for the most pre-maturely born infants, the answer remains uncertain. Outside of the medical community and families whose lives have been irrevocably altered, Baby Doe has become a national non-issue, all but hidden from public view.

Two schools of compassionate thought are In conflict here. Focused on the infant's right to life, one side believes that where there is the slightest hope that a baby will beat the odds and live, that chance must be taken.

The other side holds that only those who must live with the burden of a disabled child — a burden that can weaken or destroy families — should have the right to demand the maximum aggressive care to ensure the child's survival. This stance takes the family's and the infant's future quality of life into account.

Only a minority of physicians subscribes to the latter view — and not only because under current law anything less than the most aggressive treatment can provoke prosecution for child abuse or manslaughter.

Trained to defeat death, doctors find it profoundly repugnant to withhold treatment. Some believe that for the sake of scientific knowledge the aggressive treatment of the tiniest babies must continue for the sake of scientific knowledge. Others support routine aggressive treatment for less altruistic reasons.

Diane Maroney of Parker, Colo. is a former neonatal nurse whose four- year-old daughter, MacKenzie born at 25 weeks, remains stricken with life- threatening chronic lung disease. Maroney will never forget the bed-side words of her daughter's neonatologist as he explained why he'd overruled their tearful decision to abjure aggressive measures: "We are doctors, and we're here to do what doctors do, regardless of whether or not we ourselves have to live with the long-term consequences."

Despite her love for her daughter, Maroney says that if she learned her next child were expected to arrive very prematurely, "I would not save her. I don't believe putting them through the pain and suffering is worth it."

There are no absolute answers to the dilemma posed by this premature miracle — only choices. But choices involve consequences. And only now, as results emerge from a mass of new research on the long-term outcome of neonatal intensive care, are these consequences becoming clear.

March 9, 1998
San Luis Obispo County Telegram Tribune
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